CLLAN Advocacy Toolkit
A set of tools to aid CLL support group initiation and local development.
Welcome to CLLAN´s Advocacy Toolkit!
Our Advocacy Toolkit aims at supporting CLL support group initiation and development in countries with little or no support outside the clinic. This comprehensive toolkit comprises a set of tools, capacity building and supportive materials on different topics. Click on the pillar title or sub-heading that is of interest to you, and you will be navigated to the filtered results section.
This Advocacy Toolkit will continue to grow. If you know of any useful tools or resources that you think this Toolkit should signpost to, please contact us at info@clladvocates.net and let us know!
GETTING STARTED
Data Security & Accountability
Starting a New Group
The Principles & Power of Advocacy
SUPPORTING PATIENTS & CARERS
CLLAN Resource Hub
Peer-to-Peer Support
Coping Tools
Support at Diagnosis (incl. Guidelines)
Support Around Treatment (incl. Guidelines)
MEETINGS & EVENTS
Organising an Event
Virtual Meetings
FINANCIAL MANAGEMENT
Generating Financial Resources
Managing & Sustaining Financial Resources
NGO Management ⓘ
NGO (non-governmental organisations)
Assessing Needs & Resources
Good Governance, Transparency & Integrity
Leadership & Management
Legal Support
Organisational Structure & Sustainability
Recruiting and Training Staff & Volunteers
Strategic Planning & Prioritization
SWOT Analysis ⓘ
SWOT (strengths, weaknesses, opportunities, and threats analysis)
COMMUNICATION
Content Development / Materials
Developing a Communication Plan
Press & Media
Raising Awareness & Getting Issues on the Public Agenda
Reaching those hard to reach
Social Media
Talk About Cancer
ENGAGING WITH STAKEHOLDERS
Collaboration with Other Groups
Engaging with Health Authorities
Engaging with Industry
Engaging with the Clinical Community
Healthcare Ecosystem & Stakeholder Management
Patient Engagement & PPI ⓘ
PPI (Patient and Public Involvement)
POLICY & ACCESS
Access to Treatment & Care
Health Economics
Health Technology Assessment (HTA)
Regulatory Systems
RESEARCH & DATA
Basic Science Knowledge
Creating Evidence & Publishing It
Patient Contribution in Research
Patient Preference Studies
Plain Language Summaries (PLS)
Conducting Surveys & Collecting Data
Disclaimer
The CLL Advocates Network (CLLAN) provides information in its toolkit for general informational purposes only. CLLAN does not guarantee the accuracy, completeness, or timeliness of the content. Users acknowledge that external link destinations and legal requirements may change beyond our control. CLLAN is not liable for any errors, omissions, or discrepancies in the content, and users are responsible for verifying information and complying with local legal requirements, which may differ from the content’s country of origin.
Tool Search
Search Results
Communication
CONTENT DEVELOPMENT / MATERIALS
- Branding & Graphic Design | Author: Share4Rare | Type: PDF document | Source: Share4Rare Advocacy Toolkit
Communication
PRESS & MEDIA
- PRESS Kit | Author: Share4Rare | Type: PDF document | Source: Share4Rare Advocacy Toolkit
Communication
SOCIAL MEDIA
- How to Promote your Rare Disease story Through Social Media | Author: Global Genes| Type: PDF guide | Source: Global Genes Resources&Toolkits
Communication
SOCIAL MEDIA
- EURORDIS Digital School on Social & Digital Media | Author: EURORDIS | Type: free online training | Source: EURORDIS Open Academy
Communication
SOCIAL MEDIA
- Lung Cancer Europe: Effective use of social media in patient organisations | Author: Lung Cance Europe | Type: webinar | Source: Lung Cancer Europe YouTube Channel
Communication
RAISING AWARENESS & GETTING ISSUES ON THE PUBLIC AGENDA
- Getting Community Health and Development Issues on the local agenda | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Getting issues on the Public Agenda, Chapter 4)
Communication
RAISING AWARENESS & GETTING ISSUES ON THE PUBLIC AGENDA
- Communicating Information about Community Health and Development Issues | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Getting issues on the Public Agenda, Chapter 4)
Communication
RAISING AWARENESS & GETTING ISSUES ON THE PUBLIC AGENDA
- Creating a Standout Awareness Campaign | Author: One Cause | Type: Free guide | Source: One Cause Blog
Communication
RAISING AWARENESS & GETTING ISSUES ON THE PUBLIC AGENDA
- Health Awareness Day Planning Guide | Author: Cigna Healthcare| Type: Free guide | Source: Cigna Healthcare – Health Awareness Day Planning Guide
Communication
RAISING AWARENESS & GETTING ISSUES ON THE PUBLIC AGENDA
- Using Storytelling to Raise Awareness for your Rare Disease | Author: Global Genes| Type: PDF guide | Source: Global Genes Resources&Toolkits
Communication
REACHING THOSE HARD TO REACH
- Strategies to improve engagement of ‘hard to reach’ older people in research on health promotion: a systematic review | Author: BMC Public Health | Type: Online resource | Source: BMC Public Heath Articles
Communication
CONTENT DEVELOPMENT / MATERIALS
- Branding and marketing | Author: Lorna Warwick | Type: Video source | Source: Joint CLL & MPN Horizons 2016, Advocacy Sessions #4.
Communication
PRESS & MEDIA
- Public relations working with media | Author: Bill Crowley | Type: Video source | Source: MPN Horizons 2017.
Communication
SOCIAL MEDIA
- Social media | Author: Cheryl Petruk, Michael Rynne | Type: Video source | Source: MPN Horizons 2018.
Communication
SOCIAL MEDIA
- Social Media | Author: Jan Geissler, Sofia Sa Cardoso | Type: Video resource | Source: Joint CLL & MPN Horizons 2016, Advocacy Sessions #4..
Communication
DEVELOPING A COMMUNICATION PLAN
- Developing a Plan for Communication | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Communications to Promote Interest and Participation, Chapter 6)
Communication
RAISING AWARENESS & GETTING ISSUES ON THE PUBLIC AGENDA
- Awareness | Author: Nick York, Bethany Torr | Type: Video source | Source: MPN Horizons 2018.
Communication
DEVELOPING A COMMUNICATION PLAN
- How to create a Communications Plan for your NGO | Author: fundsforNGOs |Type: Free guide | Source: fundsforNGOs
Communication
TALK ABOUT CANCER
- “How To Guide” – Talk about cancer | Author: UICC – Union for International Cancer Control | Type: PDF guide | Source: World Cancer Day 2023 – How to guides
Communication
CONTENT DEVELOPMENT / MATERIALS
- How to develop good content and patient materials – print, online and video | Presenter / Author: Judith Taylor (Thyroid Cancer Alliance) | Type: Slide Presentation | Source: WECAN Academy Knowledge Base
Communication
SOCIAL MEDIA
- “How To Guide Social Media” | Author: UICC – Union for International Cancer Control | Type: PDF guide | Source: World Cancer Day 2023 – How to guides
Communication
SOCIAL MEDIA
- Using Social Media for Digital Advocacy | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Conducting a Direct Action Campaign, Chapter 33)
Communication
PRESS & MEDIA
- “How To Guide” – Get the media talking | Author: UICC – The Union for International Cancer Control (Switzerland) | Type: PDF guide | Source: World Cancer Day 2023 – How to guides
Communication
PRESS & MEDIA
- Media Advocacy | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Organizing for Effective Advocacy, Chapter 34)
Engaging with stakeholders
COLLABORATION WITH OTHER GROUPS
- Toolkit on Building National Coalitions of Patient Organisations | Author: European Patients Forum | Type: PDF toolkit | Source: European Patients Forum Library
Engaging with stakeholders
HEALTHCARE ECOSYSTEM & STAKEHOLDER MANAGEMENT
- Healthcare Ecosystem and Stakeholders Management | Author/Presenter: Tamás Bereczky (EUPATI) | Type: Slide presentation | Source: ALAN Global Summit 2023
Engaging with stakeholders
HEALTHCARE ECOSYSTEM & STAKEHOLDER MANAGEMENT
- Healthcare Ecosystem and Stakeholders Management | Author/Presenter: Tamás Bereczky (EUPATI) | Type: Graphic Notes | Source: ALAN Global Summit 2023
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- Understanding the possible future directions of patient involvement in drug development | Moderator: Tamás Bereczky| Panelists: Giovanni Marconi, Alexey Salamakha, Anne-Pierre Pickaert, Jens Hasskar l Type: Slide Presentation | Source: ALAN Global Summit 2023
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- Patient involvement in drug development | Moderator: Tamás Bereczky| Panelists: Giovanni Marconi, Alexey Salamakha, Anne-Pierre Pickaert, Jens Hasskar l Type: Graphic notes| Source: ALAN Global Summit 2023
Engaging with stakeholders
COLLABORATION WITH OTHER GROUPS
- CLLAN Resource Hub | Author: CLL Advocates Network | Type: Online Support Service and Resource | Source: CLL Advocates Network
Engaging with stakeholders
ENGAGING WITH INDUSTRY
- EFPIA Code of Practice | Author: EFPIA | Type: PDF tool | Source: EFPIA Relationships & Code
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- Patient involvement in the development, regulation and safe use of medicines | Author: CIOMS | Type: PDF book | Source: EUPATI Patient Expert Training Programme
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- Patient-Centered Outcomes Research Institute (PCORI)’s Engagement Resources Author: PCORI | Type: guidebooks / on demand training | Source: PCORI Programs and Engagement
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- PFMD’s How-to guide for patient engagement in the early discovery and preclinical phases | Author: Patient Engagement Management Suite | Type: PDF guides | Source: PEM Suite How-To-Guides
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- PFMD’s How-To Guide on Patient Engagement in the development of a Clinical Outcome Assessment | Author: Patient Engagement Management Suite | Type: PDF guides | Source: PEM Suite How-To-Guides
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- PFMD’s How-to Guide on Patient Engagement in Clinical Trial Protocol Design | Author: Patient Engagement Management Suite | Type: PDF guides | Source: PEM Suite How-To-Guides
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- Fair Patient Engagement Planner | Author: Patient Engagement Synapse | Type: online resource | Source: Patient Engagement Synapse
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- PFMD’s tools to support fair remuneration of the patient community for interactions with the pharmaceutical industry | Author: Patient Engagement Management Suite | Type: online resource | Source: PEM Suite Products
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- National Health Council Patient Engagement Fair-Market Value Calculator | Author: National Health Council | Type: online tool | Source: National Health Council Resources
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- How advocacy can influence access | Author: Teodora Kolarova | Type: video resource | Source: MPN Horizons (2018)
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- Professionalising Patient Advocates | Author: Sarunas Narbutas | Type: video resource | Source: MPN Horizons (2017)
Engaging with stakeholders
- Stakeholder Management | Author: Share4Rare | Type: PDF document | Source: Share4Rare Advocacy Toolkit
Engaging with stakeholders
HEALTHCARE ECOSYSTEM & STAKEHOLDER MANAGEMENT
- Healthcare Ecosystem and Stakeholder Management | Author/Presenter: Tamás Bereczky (EUPATI) | Type: Slide presentation | Source: WECAN Academy Knowledge Base
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- How therapy development works, the development lifecycle, endpoints, trial design, patient engagement in research | Author/Presenter: Jan Geissler (EUPATI, LePAF, WECAN, Patvocates)| Type: Slide Presentation | Source: WECAN Academy Knowledge Base
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- PFMD’s Patient Engagement Quality Guidance | Author: Patient Engagement Management Suite | Type: PDF guides | Source: PEM Suite Products
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- European Medicines Agency (EMA) Patients and consumers | Author: European Medicines Agency | Type: online resource | Source: European Medicines Agency – Partners&Networks
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- HTAi Patient and Citizen Involvement Group’s resources and material | Author: Health Technology Assessment International | Type: online source with slides, posters, PDF content | Source: HTAi
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- HTAi webinar: How Patient Involvement is Making a Difference in HTA Perspectives of Impact | Author: Health Technology Assessment International | Type: webinar | Source: HTAi YouTube Channel
Engaging with stakeholders
PATIENT ENGAGEMENT & PPI
- EUPATI webinar: Patient Involvement in HTA in Europe | Author: EUPATI | Type: webinar | Source: EUPATI YouTube Channel
Engaging with stakeholders
ENGAGING WITH INDUSTRY
- Consultancy Reference Agreement | Author: The Workshop of European Cancer Patient Advocacy Networks (WECAN) | Type: Word template Reference Agreement| Source: Reasonable Legal Agreements between Patient Advocates and Pharmaceutical Companies
Engaging with stakeholders
ENGAGING WITH INDUSTRY
- Community Speaker Reference Agreement | Author: The Workshop of European Cancer Patient Advocacy Networks (WECAN) | Type: Word template Reference Agreement | Source: Reasonable Legal Agreements between Patient Advocates and Pharmaceutical Companies
Engaging with stakeholders
ENGAGING WITH INDUSTRY
- Collaboration Reference Agreement | Author: The Workshop of European Cancer Patient Advocacy Networks (WECAN) | Type: Word template Reference Agreement | Source: Reasonable Legal Agreements between Patient Advocates and Pharmaceutical Companies
Engaging with stakeholders
ENGAGING WITH INDUSTRY
- Advisory Board Reference Agreement | Author: The Workshop of European Cancer Patient Advocacy Networks (WECAN) | Type: Word template Reference Agreement | Source: Reasonable Legal Agreements between Patient Advocates and Pharmaceutical Companies
Events
ORGANISING AN EVENT
- “How To Guide” – Organise an event | Author: UICC – Union for International Cancer Control | Type: PDF guide | Source: World Cancer Day 2023 – How to guides
Financial Management
MANAGING & SUSTAINING FINANCIAL RESOURCES
- Financial Management of Non-Profit Patient Organisations | Presenter / Author: Markus Wartenberg (Germany) | Type: Slide Presentation | Source: WECAN Academy Knowledge Base
Financial Management
MANAGING & SUSTAINING FINANCIAL RESOURCES
- Managing Finances | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Generating, Managing, and Sustaining Financial Resources, Chapter 43)
Financial Management
MANAGING & SUSTAINING FINANCIAL RESOURCES
- Financial management | Chair: Jana Pelouchova | Speaker: Jan Geissler | Type: Slide presentation | Source: ALAN Global Summit 2023
Financial Management
MANAGING & SUSTAINING FINANCIAL RESOURCES
- Financial management | Chair: Jana Pelouchova | Speaker: Jan Geissler | Type: Graphic Notes | Source: ALAN Global Summit 2023
Financial Management
GENERATING FINANCIAL RESOURCES
- Fundraising for Nonprofits | Author: Share4Rare | Type: webinar | Source: Share4Rare YouTube Channel
Financial Management
GENERATING FINANCIAL RESOURCES
- Finding your Fundraising Strategy | Author: Global Genes | Type: PDF toolkit| Source: Global Genes Resources&Toolkits
Financial Management
GENERATING FINANCIAL RESOURCES
- Fundraising Toolkit for Patient Organisations | Author: European Patients Forum | Type: PDF toolkit| Source: European Patients Forum Library
Financial Management
GENERATING FINANCIAL RESOURCES
- Canadian Cancer Survivor Network – Webinar on Pharma funding of Patient Groups | Author: Canadian Cancer Survivor Network | Type: webinar | Source: Canadian Cancer Survivor Network YouTube Channel
Financial Management
GENERATING FINANCIAL RESOURCES
- Share4Rare effective fundraising | Author: Share4Rare | Type: PDF guide | Source: Share4Rare Library
Financial Management
GENERATING FINANCIAL RESOURCES
- NORD’s A to Z Fundraising Guide | Author: National Organization for Rare Disorders | Type: PDF guide | Source: NORD Resource Library
Financial Management
GENERATING FINANCIAL RESOURCES
- FSHD Rare Disease Day Fundraising Toolkit | Author: FSDH Global Research Foundation Ltd | Type: PDF guide | Source: FSHD Educational Toolkits
Financial Management
GENERATING FINANCIAL RESOURCES
- Cancer Research Example on how to do your own fundraising | Author: Cancer Research UK | Type: online resource | Source: Cancer Research UK Get Involved Initiative
Financial Management
GENERATING FINANCIAL RESOURCES
- The giving machine fundraising ideas | Author: The Giving Machine | Type: online resource | Source: The Giving machine blog post
Financial Management
GENERATING FINANCIAL RESOURCES
- EPF’s webinar on Transparent Funding in Patient Organisations | Author: European Patients Forum | Type: webinar | Source: European Patients Forum YouTube Channel
Financial Management
GENERATING FINANCIAL RESOURCES
- MPE Masterclass 2021 | Fundraising for patient groups and collaboration with industry | Author: Myeloma Patients Europe | Type: webinar | Source: Myeloma Patients Europe YouTube Channel
Financial Management
GENERATING FINANCIAL RESOURCES
- Spotlight on events fundraising – Be inspired by some of the world’s most original and effective events | Author: SOFII | Type: Online resource | Source: sofii.org
Financial Management
GENERATING FINANCIAL RESOURCES
- Getting Grants and Financial Resources | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Generating, Managing, and Sustaining Financial Resources, Chapter 42)
Financial Management
GENERATING FINANCIAL RESOURCES
Financial Management
GENERATING FINANCIAL RESOURCES
- Fundraising | Author: William Crowley, Werner Zinkand | Type: Video resource | Source: Joint CLL & MPN Horizons 2016, Advocacy Sessions #2.
Financial Management
GENERATING FINANCIAL RESOURCES
- Fundraising in non-pharma | Author: Kristofer Rogers | Type: Video resource| Source: CML Horizons 2016.
Financial Management
GENERATING FINANCIAL RESOURCES
- Innovative new ways of fundraising | Author: Osnat Dvorkin | Type: Video resource | Source: CML Horizons 2021.
Financial Management
GENERATING FINANCIAL RESOURCES
- Writing grant request | Author: Kristofer Rogers | Type: PDF file| Source: CML Horizons 2016.
Financial Management
GENERATING FINANCIAL RESOURCES
- Writing grant request | Author: Kristofer Rogers | Type: Video resource | Source: CML Horizons 2016.
Financial Management
GENERATING FINANCIAL RESOURCES
- Applying for Grants | Author: The University of Kansas | Type: Toolkit | Source: Community Tool Box (Toolkit #14)
Financial Management
GENERATING FINANCIAL RESOURCES
- Understanding the EU Proposal Writing and Submission Process | Author: fundsforNGOs | Type: Training Course | Source: fundsforNGOs
Financial Management
MANAGING & SUSTAINING FINANCIAL RESOURCES
- Financial Management of Non-Profit Patient Organisations | Presenter / Author: Markus Wartenberg (Germany) | Type: Slide Presentation | Source: WECAN Academy Knowledge Base
Financial Management
MANAGING & SUSTAINING FINANCIAL RESOURCES
- Managing Finances | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Generating, Managing, and Sustaining Financial Resources, Chapter 43)
Financial Management
MANAGING & SUSTAINING FINANCIAL RESOURCES
- Developing a Plan for Financial Sustainability | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Generating, Managing, and Sustaining Financial Resources, Chapter 42)
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- Patient Advocacy – The Growing Voice of Healthcare | Author: Ilze Abersone | Type: Online Journal article | Source: Value & Outcomes Spotlight, January/February 2022 edition, p. 20-26
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- Patient Partnerships for Rare Diseases | Author: Rare 2030 | Type: PDF file | Source: Rare 2030 Knowledge Base
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- Advocacy Principles | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Organizing for Effective Advocacy, Chapter 30)
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- EU Patient Advocacy Toolkit | Author: Share4Rare | Type: Online resource | Source: European Commission, Research & Innovation
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- “How To Guide” – Be an advocate | Author: UICC – Union for International Cancer Control | Type: PDF guide | Source: World Cancer Day 2023 – How to guides
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- Advocating for Change | Author: The University of Kansas | Type: Toolkit | Source: Community Tool Box (Toolkit #10)
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- Responding to Counterattacks | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Organizing for Effective Advocacy, Chapter 35)
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- European Patient Forum (EPF) Advocacy 101 – Advocacy course for young patients | Author: European Patients Forum | Type: free online course | Source: European Patents Forum Capacity Building Programme
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- How advocacy can influence access | Author: Teodora Kolarova | Type: video resource | Source: MPN Horizons (2018)
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- EURORDIS Open Academy: Leadership & Advocacy training | Author: EURORDIS | Type: free online training | Source: EURORDIS Open Academy
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- Introduction to Advocacy for Patient Organisations | Author: Global Heart Hub | Type: webinar | Source: Global Heart Hub YouTube Channel
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- Share4Rare toolkit for patient advocacy | Author: Share4Rare | Type: online resource | Source: Share4Rare Library
Getting started
STARTING A NEW GROUP
- Getting Started – Challenges and Lessons | Presenter / Author: Dr Neil Graham (New Zealand) | Type: Video recording | Source: CLL Horizons (Advocacy Session #2 at CLL Horizons 2019)
Getting started
STARTING A NEW GROUP
- Creating a Business Plan | Author: The University of Kansas | Type: Global online resource | Source: Community Tool Box (Generating, Managing, and Sustaining Financial Resources, Chapter 42)
Getting started
DATA SECURITY AND ACCOUNTABILITY
- GDPR and data protection in patient advocacy – EUROPE ONLY! | Presenter / Author: Julius Zaleskis (Lithuania) | Type: Slide Presentation | Source: WECAN Academy Knowledge Base
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- Professionalising Patient Advocates | Author: Sarunas Narbutas | Type: video resource | Source: MPN Horizons (2017)
Getting started
THE PRINCIPLES & POWER OF ADVOCACY
- Journey to a professional and empowered advocate | Author: Alfonso Aguaron | Type: video resource | Source: MPN Horizons (2017)
Getting started
STARTING A NEW GROUP
- How to organize patient organizations from a startup to a mature group (Case study India)| Author: Param Puthen | Type: Video resource | Source: MPN Horizons (2019)
Getting started
STARTING A NEW GROUP
- How to organize patient organizations from a startup to a mature group (Case study Sweden)| Author: Lise-Lott Eriksson| Type: Video resource | Source: MPN Horizons (2019)
Getting started
STARTING A NEW GROUP
- How to organize patient organizations from a startup to a mature group (Case study UK)| Author: Marion Campbell Drew| Type: Video resource | Source: MPN Horizons (2019)
Getting started
STARTING A NEW GROUP
- Challenges when starting out: Ireland CLL Support Group (Case study) | Author: Michael Rynne | Type: Video resource | Source: MPN Horizons (2016)
Getting started
STARTING A NEW GROUP
- Starting organization from scratch | Author: Boris Machavariani| Type: Video resource | Source: CML Horizons 2017.
Getting started
STARTING A NEW GROUP
- Starting organization from scratch | Author: Boris Machavariani| Type: PDF Guide | Source: CML Horizons 2017.
MEETINGS & EVENTS
VIRTUAL MEETINGS
- Wecan’s Guidance and checklists for patient organizations to run virtual meetings | Author: WeCan | Type: online resource | Source: WeCan Virtual Meeting Resource Center
NGO Management & Sustainability
GOOD GOVERNANCE, TRANSPARENCY & INTEGRITY
- Establishing good NGO governance | Author/Presenter: Jan Geissler (Patvocates) | Type: Slide presentation | Source: WECAN Academy Knowledge Base
NGO Management & Sustainability
GOOD GOVERNANCE, TRANSPARENCY & INTEGRITY
- Ensuring transparency and integrity | Author/Presenter: Tamás Bereczky (EUPATI) | Type: Slide presentation | Source: WECAN Academy Knowledge Base
NGO Management & Sustainability
GOOD GOVERNANCE, TRANSPARENCY & INTEGRITY
- A Handbook of NGO governance | Author: Marilyn Wyatt | Source: European Center for Not-for-Profit Law
NGO Management & Sustainability
LEGAL SUPPORT
- Webinar on how patient organizations can access pro bono legal support (European Patient Forum) | Author: European Patients Forum | Type: webinar | Source: European Patients Forum YouTube Channel
NGO Management & Sustainability
SWOT ANALYSIS
- SWOT Analysis: Strengths, Weaknesses, Opportunities, and Threats | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Assessing Community Needs & Resources, Chapter 3)
NGO Management & Sustainability
STRATEGIC PLANNING & PRIORITIZATION
- Developing a Strategic Plan | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Developing a Strategic Plan and Organizational Structure, Chapter 8)
NGO Management & Sustainability
STRATEGIC PLANNING & PRIORITIZATION
- Developing Strategic and Action Plans | Author: The University of Kansas | Type: Toolkit | Source: Community Tool Box (Toolkit #5)
NGO Management & Sustainability
STRATEGIC PLANNING & PRIORITIZATION
- An established patient group’s priorities | Presenter / Author: Lise-Lott Eriksson (Sweden) | Type: Video recording | Source: CLL Horizons (Advocacy Session #2 at CLL Horizons 2019)
NGO Management & Sustainability
STRATEGIC PLANNING & PRIORITIZATION
- The European Patients’ Forum Strategic Plan 2021-2026 | Author: European Patients Forum | Type: PDF guide | Source: European Patients Forum Library
NGO Management & Sustainability
ORGANISATIONAL STRUCTURE AND SUSTAINABILITY
- Developing an Organizational Structure | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Developing a Strategic Plan and Organizational Structure, Chapter 9)
NGO Management & Sustainability
ORGANISATIONAL STRUCTURE AND SUSTAINABILITY
- Improving Organizational Management and Development | Author: The University of Kansas | Type: Toolkit | Source: Community Tool Box (Toolkit #15)
NGO Management & Sustainability
ORGANISATIONAL STRUCTURE AND SUSTAINABILITY
- Sustainable Organisations | Presenter / Author: Lorna Warwick (Canada) | Type: Video recording | Source: CLL Horizons (Advocacy Session #2 at CLL Horizons 2019)
NGO Management & Sustainability
ORGANISATIONAL STRUCTURE AND SUSTAINABILITY
- Planning for Sustainability | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Social Marketing and Sustainability of the Initiative, Chapter 46)
NGO Management & Sustainability
ORGANISATIONAL STRUCTURE AND SUSTAINABILITY
- Sustaining the Work or Initiative | Author: The University of Kansas | Type: Toolkit | Source: Community Tool Box (Toolkit #16)
NGO Management & Sustainability
LEADERSHIP & MANAGEMENT
- Orienting Ideas in Leadership | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Leadership & Management, Chapter 13)
NGO Management & Sustainability
LEADERSHIP & MANAGEMENT
- Core Functions in Leadership | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Leadership & Management, Chapter 14)
NGO Management & Sustainability
LEADERSHIP & MANAGEMENT
- Building Leadership | Author: The University of Kansas | Type: Toolkit | Source: Community Tool Box (Toolkit #6)
NGO Management & Sustainability
LEADERSHIP & MANAGEMENT
- Becoming an Effective Manager | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Leadership & Management, Chapter 15)
NGO Management & Sustainability
LEADERSHIP & MANAGEMENT
- Group Facilitation and Problem-Solving | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Leadership & Management, Chapter 16)
NGO Management & Sustainability
LEADERSHIP & MANAGEMENT
- Toolkit on Empowering Leadership and Positive Governance | Author: European Patients Forum | Type: PDF toolkit | Source: European Patients Forum Library
NGO Management & Sustainability
RECRUITING AND TRAINING STAFF & VOLUNTEERS
- Hiring and Training Key Staff | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Developing a Strategic Plan and Organizational Structure, Chapter 10)
NGO Management & Sustainability
RECRUITING AND TRAINING STAFF & VOLUNTEERS
- Recruiting and Training Volunteers | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Developing a Strategic Plan and Organizational Structure, Chapter 11)
NGO Management & Sustainability
RECRUITING AND TRAINING STAFF & VOLUNTEERS
- Providing Training and Technical Assistance | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Developing a Strategic Plan and Organizational Structure, Chapter 12)
NGO Management & Sustainability
RECRUITING AND TRAINING STAFF & VOLUNTEERS
- Patient Engagement Training for Medical Devices | Author: Patient Focused Medicines Development (PFMD) | Type: training program | Source: PFMD Learning
NGO Management & Sustainability
RECRUITING AND TRAINING STAFF & VOLUNTEERS
- PFMD’s Patient Engagement Training for the Pharmaceutical Sector | Author: Patient Focused Medicines Development (PFMD) | Type: training program | Source: PFMD Learning
NGO Management & Sustainability
RECRUITING AND TRAINING STAFF & VOLUNTEERS
- Patient Engagement Toolbox | Author: PARADIGM | Type: toolbox | Source: PARADIGM website
NGO Management & Sustainability
RECRUITING AND TRAINING STAFF & VOLUNTEERS
- Patient Focused Medicines Development (PFMD)’s Patient Engagement Synapse Training and Resources Repository | Author: Patient Engagement Synapse | Type: training course | Source: Patient Engagement Synapse PE Training
NGO Management & Sustainability
RECRUITING AND TRAINING STAFF & VOLUNTEERS
- How to train advocates to handle newly diagnosed patients and complex situations | Author: Guy Tavori, Cristian Neves | Type: PDF guide | Source: CML Horizons 2016.
NGO Management & Sustainability
RECRUITING AND TRAINING STAFF & VOLUNTEERS
- How to train advocates to handle newly diagnosed patients and complex situations | Author: Guy Tavori, Cristian Neves | Type: Video source | Source: CML Horizons 2016.
NGO MANAGEMENT & SUSTAINABILITY
ASSESSING NEEDS & RESOURCES
- Developing a Plan for Assessing Local Needs and Resources | Author: The University of Kansas | Type: Online resource | Source: Community Tool Box (Assessing Community Needs & Resources, Chapter 3)
NGO Management & Sustainability
RECRUITING AND TRAINING STAFF & VOLUNTEERS
- Professionalising Patient Advocates | Author: Sarunas Narbutas | Type: video resource | Source: MPN Horizons (2017)
NGO Management & Sustainability
RECRUITING AND TRAINING STAFF & VOLUNTEERS
- Journey to a professional and empowered advocate | Author: Alfonso Aguaron | Type: video resource | Source: MPN Horizons (2017)
Policy & Access
HEALTH TECHNOLOGY ASSESSMENT (HTA)
- Guidance for patient involvement in HTA | Author/Presenter: Amy Hunter, Karen Facey, Victoria Thomas, David Haerry, Kay Warner, Ingrid Klingmann, Matthew May, Wolf See | Type: Research Article | Source: Frontiers
Policy & Access
HEALTH TECHNOLOGY ASSESSMENT (HTA)
- HTA Key Definitions | Author/Presenter: The European´s Patients´ Academy (EUPATI) | Type: Toolbox resources | Source: EUPATI Toolbox
Policy & Access
HEALTH TECHNOLOGY ASSESSMENT (HTA)
- HTA systems in Europe | Author/Presenter: The European´s Patients´ Academy (EUPATI) | Type: Toolbox resources | Source: EUPATI Toolbox
Policy & Access
HEALTH TECHNOLOGY ASSESSMENT (HTA)
- Mini course Starter-kit on HTA | Author/Presenter: The European´s Patients´ Academy (EUPATI) | Type: Toolbox resources | Source: EUPATI Toolbox
Policy & Access
HEALTH TECHNOLOGY ASSESSMENT (HTA)
- Patient involvement in the HTA decision-making process | Author/Presenter: The European´s Patients´ Academy (EUPATI) | Type: Toolbox resources | Source: EUPATI Toolbox
Policy & Access
HEALTH TECHNOLOGY ASSESSMENT (HTA)
- The use of HTA and the importance of patient and patient organisation involvement in the decision-making process | Author/Presenter: Zack Pemberton-Whiteley (Leukaemia Care) | Type: Interview | Source: VJHemOnc – Video Journal of Hematological Oncology
Policy & Access
HEALTH TECHNOLOGY ASSESSMENT (HTA)
- Can We Afford to Exclude Patients Throughout HTA? | Author/Presenter: Janet L. Wale, David Chandler, Deborah Collyar, Dominique Hamerlijnck, Roberto Saldana, Zack Pemberton-Whiteley | Type: Research Article | Source: Frontiers
Policy & Access
HEALTH TECHNOLOGY ASSESSMENT (HTA)
- Affordability and sustainability. Difference between HTA and payer perspective. What is Europe’s challenge? How to influence reimbursement decisions as a patient advocate? | Author/Presenter: Zack Pemberton-Whiteley (Acute Leukaemia Network / Leukaemia Care UK) | Type: Slide presentation | Source: WECAN Academy Knowledge Base
Policy & Access
REGULATORY SYSTEMS
- Regulatory system. Overview of access pathways – why is access to treatment, care and diagnostics an issue | Author/Presenter: David Haerry (EUPATI) Type: Slide presentation | Source: WECAN Academy Knowledge Base
Policy & Access
HEALTH ECONOMICS
- Basics of Health Economics | Author/Presenter: Jean-Pierre THIERRY | Type: Slide presentation | Source: WECAN Academy Knowledge Base
Policy & Access
ACCESS TO TREATMENT AND CARE
- How and why does access to treatment and care differ between EU Member States, and how to address it in advocacy and policy? | Author/Presenter: David Haerry (EUPATI) Type: Slide presentation | Source: WECAN Academy Knowledge Base
Policy & Access
HEALTH TECHNOLOGY ASSESSMENT (HTA)
- HTAi webinar: How Patient Involvement is Making a Difference in HTA Perspectives of Impact | Author: Health Technology Assessment International | Type: webinar | Source: HTAi YouTube Channel
Policy & Access
HEALTH TECHNOLOGY ASSESSMENT (HTA)
- EUPATI webinar: Patient Involvement in HTA in Europe | Author: EUPATI | Type: webinar | Source: EUPATI YouTube Channel
Policy & Access
ACCESS TO TREATMENT AND CARE
- How advocacy can influence access | Author: Teodora Kolarova | Type: video resource | Source: MPN Horizons (2018)
Policy & Access
ACCESS TO TREATMENT AND CARE
- Access to treatment in western countries | Author: Jan Geissler | Type: PDF file | Source: CML Horizons 2017.
Policy & Access
ACCESS TO TREATMENT AND CARE
- Access to treatment in western countries | Author: Jan Geissler | Type: Video resource | Source: CML Horizons 2017.
Policy & Access
ACCESS TO TREATMENT AND CARE
- Access to treatment in LMIC | Author: Pat Garcia-Gonzalez | Type: PDF file | Source: CML Horizons 2017.
Policy & Access
ACCESS TO TREATMENT AND CARE
- Access to treatment in LMIC | Author: Pat Garcia-Gonzalez | Type: Video resource | Source: CML Horizons 2017.
Research & Data
CREATING EVIDENCE AND PUBLISHING IT
- How can advocacy groups generate and publish results | Author: Giora Sharf | Type: Video resource | Source: CML Horizons 2016.
Research & Data
PATIENT CONTRIBUTION IN RESEARCH
- Rare disease patients’ participation in research | Author: EURORDIS | Type: Video resource | Source: EURORDIS Resource Library
Research & Data
PATIENT CONTRIBUTION IN RESEARCH
- Patient involvement in drug development | Author: Bettina Ryll | Type: Video resource | Source: CML Horizons 2016.
Research & Data
CREATING EVIDENCE AND PUBLISHING IT
- Barking up the right tree on access, policy and research. Why evidence based advocacy? | Author: Jan Geissler| Type: PDF document | Source: CML Horizons 2018.
Research & Data
CREATING EVIDENCE AND PUBLISHING IT
- Evidence-Based Advocacy: Creating Evidence for Advocacy Impact | Presenter / Author: Zack Pemberton-Whiteley (UK) | Type: Video recording | Source: CLL Horizons 2021 (Advocacy Session #1 at CLL Horizons 2021)
Research & Data
CREATING EVIDENCE AND PUBLISHING IT
- How can advocacy groups generate and publish results | Author: Giora Sharf | Type: PDF file | Source: CML Horizons 2016.
Research & Data
PATIENT CONTRIBUTION IN RESEARCH
- Patient involvement in drug development | Author: Bettina Ryll | Type: PDF file | Source: CML Horizons 2016.
Research & Data
CREATING EVIDENCE AND PUBLISHING IT
- Understanding Evidence-Based Research Methods: Developing and Conducting Effective Surveys (skip to 20:10 on video) | Presenter / Author: Daniel Ratchford (UK) | Type: Video recording | Source: CLL Horizons 2021 (Advocacy Session #1 at CLL Horizons 2021)
Research & Data
BASIC SCIENCE KNOWLEDGE
- Basics of statistics, reading scientific papers and publications | Author/Presenter: Bettina Ryll (Melanoma Patients Network Europe) | Type: Slide Presentation | Source: WECAN Academy Knowledge Base
Research & Data
PATIENT CONTRIBUTION IN RESEARCH
- Understanding the possible future directions of patient involvement in drug development | Moderator: Tamás Bereczky| Panelists: Giovanni Marconi, Alexey Salamakha, Anne-Pierre Pickaert, Jens Hasskar l Type: Slide Presentation | Source: ALAN Global Summit 2023
Research & Data
BASIC SCIENCE KNOWLEDGE
- Basics of biobanks and registries – types, value, challenges, relevance for patient advocacy | Author/Presenter: Mary Wang (Fondazione Telethon) | Type: Slide Presentation | Source: WECAN Academy Knowledge Base
Research & Data
PATIENT CONTRIBUTION IN RESEARCH
- Patient involvement in drug development | Moderator: Tamás Bereczky| Panelists: Giovanni Marconi, Alexey Salamakha, Anne-Pierre Pickaert, Jens Hasskar l Type: Graphic notes| Source: ALAN Global Summit 2023
Research & Data
BASIC SCIENCE KNOWLEDGE
- Hot topics in oncology: Precision medicine, immuno-oncology, genomics, big data, real-world-data | Author/Presenter: Luca Mazzarella (ESO) & Jan Geissler (EUPATI, LePAF, WECAN, Patvocates) & Bettina Ryll (Melanoma Patients Network Europe) | Type: Slide Presentation | Source: WECAN Academy Knowledge Base
Research & Data
BASIC SCIENCE KNOWLEDGE
- How therapy development works, the development lifecycle, endpoints, trial design, patient engagement in research | Author/Presenter: Jan Geissler (EUPATI, LePAF, WECAN, Patvocates) | Type: Slide Presentation | Source: WECAN Academy Knowledge Base
Research & Data
BASIC SCIENCE KNOWLEDGE
- Patient-reported outcomes, and other patient-relevant measures and endpoints | Author/Presenter: Sergio Diaz (Myeloma UK) & Madeline Pe (EORTC) | Type: Slide Presentation | Source: WECAN Academy Knowledge Base
Research & Data
BASIC SCIENCE KNOWLEDGE
- Following Scientific News for Patient Advocates | Author: Share4Rare | Type: webinar | Source: Share4Rare YouTube Channel
Research & Data
CREATING EVIDENCE AND PUBLISHING IT
- Evidence-Based Patient Advocacy: Creating evidence for advocacy impact | Author/Presenter: Zack Pemberton-Whiteley (Acute Leukaemia Advocates Network) | Type: Slide Presentation | Source: WECAN Academy Knowledge Base
Research & Data
CREATING EVIDENCE AND PUBLISHING IT
- Evidence-Based Advocacy: Fundamentals | Author: WECAN | Type: Training Course (self-paced) | Source: WECAN Academy
Research & Data
CREATING EVIDENCE AND PUBLISHING IT
- Evidence-Based Advocacy: Strategy & Design |Author: WECAN | Type: Training Program for patient advocates | Source: WECAN
Research & Data
CREATING EVIDENCE AND PUBLISHING IT
- Evidence Generation and Publication | Author: WECAN | Type: Training Program for patient advocates | Source: WECAN
Research & Data
CREATING EVIDENCE AND PUBLISHING IT
- Patients in Publications | Author: WECAN / Envision The Patient | Type: Training Program for patient advocates | Source: WECAN Academy
Research & Data
BASIC SCIENCE KNOWLEDGE
- EUPATI’s Open Classroom’s online courses in medicines research and development | Author: EUPATI | Type: e-learning | Source: CIOMS publications
Research & Data
BASIC SCIENCE KNOWLEDGE
- EURORDIS Open Academy School on Scientific Innovation & Translational Research | Author: EURORDIS | Type: e-learning | Source: EURORDIS Open Academy
Research & Data
BASIC SCIENCE KNOWLEDGE
- EURORDIS Open Academy School on Medicines Research & Development | Author: EURORDIS | Type: free online training | Source: EURORDIS Open Academy
Research & Data
CONDUCTING SURVEYS & COLLECTING DATA
- Scottish Health Council (SHC)’s Participation Toolkit: How to Conduct Surveys | Author: Scottish Health Council | Type: PDF toolkit | Source: The Participation Toolkit (The participation tools, page 61)
Research & Data
CONDUCTING SURVEYS & COLLECTING DATA
- Patient Focused Medicines Development (PFMD)’s Approaches to identify what outcomes matter most to patients & families | Author: Patient Engagement Management Suite| Type: PDF tool / excel sheet | Source: The Global Patient Experience Data Navigator | Full excel sheet
Research & Data
CONDUCTING SURVEYS & COLLECTING DATA
- PFMD’s Tools for measuring outcomes that matter to patients & families | Author: Patient Engagement Management Suite| Type: PDF tool / excel sheet | Source: The Global Patient Experience Data Navigator | Full excel sheet
Research & Data
CONDUCTING SURVEYS & COLLECTING DATA
- PFMD’s Patient Experience Data use throughout the product development cycle | Author: Patient Engagement Management Suite| Type: PDF Patient Experience Data tool | Source: The Global Patient Experience Data Navigator | Full excel sheet
Research & Data
CONDUCTING SURVEYS & COLLECTING DATA
- PFMD’s Patient Experience Data use throughout the Healthcare process | Author: Patient Engagement Management Suite| Type: PDF Patient Experience Data tool | Source: The Global Patient Experience Data Navigator | Full excel sheet
Research & Data
PLAIN LANGUAGE SUMMARIES (PLS)
- PFMD’s plain language summaries (PLS) of peer-reviewed publications and conference presentations: practical ‘How-To’ Guide for multi-stakeholder co-creation | Author: Patient Engagement Management Suite | Type: PDF guide | Source: PEM Suite How-To-Guides
Research & Data
PATIENT PREFERENCE STUDIES
- PREFER – Patient Preferences – Innovative Medicines Initiative (IMI) | Author: Innovative Medicines Initiative | Type: online resource | Source: IMI Project Factsheets
Research & Data
CREATING EVIDENCE AND PUBLISHING IT
- Barking up the right tree on access, policy and research. Why evidence based advocacy? | Author: Jan Geissler| Type: Video source | Source: CML Horizons 2018.
Research & Data
CREATING EVIDENCE AND PUBLISHING IT
- How to partner with medical writers | Author: Marion Alzer| Type: PDF file | Source: CML Horizons 2016
Supporting Patients & Carers
CLLAN RESOURCE HUB
- CLLAN Resource Hub | Author: CLL Advocates Network | Type: Online Support Service and Resource | Source: CLL Advocates Network
Supporting Patients & Carers
SUPPORT AT DIAGNOSIS (INCL. GUIDELINES)
- Compromised: Uncovering the immune-related challenges facing people with chronic lymphocytic leukaemia | Author: CLL Advocates Network | Type: Website / booklets | Source: CLL Advocates Network
Supporting Patients & Carers
PEER-TO-PEER SUPPORT
- How to train advocates to handle newly diagnosed patients and complex situations | Author: Guy Tavori, Cristian Neves | Type: PDF guide | Source: CML Horizons 2016.
Supporting Patients & Carers
PEER-TO-PEER SUPPORT
- How to train advocates to handle newly diagnosed patients and complex situations | Author: Guy Tavori, Cristian Neves | Type: Video source | Source: CML Horizons 2016.
Supporting Patients & Carers
SUPPORT AT DIAGNOSIS (INCL. GUIDELINES)
- CLL: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up | Authors: ESMO Guidelines Committee | Type: PDF file | Source: ESMO Annals of Oncology
Supporting Patients & Carers
SUPPORT AT DIAGNOSIS (INCL. GUIDELINES)
- Diagnosis Booklet | Author: Rare Cancers Australia | Type: Video recording | Source: Rare Cancer Support Guide
Supporting Patients & Carers
SUPPORT AT DIAGNOSIS (INCL. GUIDELINES)
- Fast Facts for Patients – Chronic Lymphocytic Leukemia | Author: Kathryn Huntley, Anna Schuh, Alessandra Tedeschi | Type: PDF booklet | Source: CLL Advocates Network
Supporting Patients & Carers
SUPPORT AT DIAGNOSIS (INCL. GUIDELINES)
- Support for patients at diagnosis | Author: Macmillan Cancer Support | Type: Free counselling & materials | Source: Macmillan Patient Support
Supporting Patients & Carers
SUPPORT AT DIAGNOSIS (INCL. GUIDELINES)
- Cancer information and booklets | Author: Macmillan Cancer Support | Type: Website / booklets | Source: Macmillan Patient Support
Supporting Patients & Carers
SUPPORT AROUND TREATMENT (INCL. GUIDELINES)
- CLL: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up | Authors: ESMO Guidelines Committee | Type: PDF file | Source: ESMO Annals of Oncology
Supporting Patients & Carers
SUPPORT AROUND TREATMENT (INCL. GUIDELINES)
- Treatment Booklet | Author: Rare Cancers Australia | Type: Video recording | Source: Rare Cancer Support Guide
Supporting Patients & Carers
SUPPORT AROUND TREATMENT (INCL. GUIDELINES)
- Treatment: types of treatment, what to expect, available options and how to cope | Author: Macmillan Cancer Support | Type: Information materials | Source: Macmillan Cancer Information and Support
Supporting Patients & Carers
COPING TOOLS / CANCER & MONEY
- Managing money when you have cancer | Author: Macmillan Cancer Support | Type: Website | Source: Macmillan Patient Support
Supporting Patients & Carers
CANCER & WORK
- Work and cancer | Author: Macmillan Cancer Support | Type: Website, Work Support Service| Source: Macmillan Patient Support
Supporting Patients & Carers
COPING TOOLS / CANCER & RELATIONSHIPS
- Relationships and Support | Author: Rare Cancers Australia | Type: Video recording | Source: Rare Cancer Support Guide
Supporting Patients & Carers
COPING TOOLS / LOOKING AHEAD
- Looking Ahead | Author: Rare Cancers Australia | Type: Video recording | Source: Rare Cancer Support Guide
Supporting Patients & Carers
PEER-TO-PEER SUPPORT
- Information sharing with patients and relatives along 3 channels: in person, in print and on-line | Author: Niels Jensen | Type: Video recording | Source: MPN Horizons (2018)
Supporting Patients & Carers
COPING TOOLS
- Empowering the caregiver | Author: Gail Sperling | Type: PDF file | Source: CML Horizons 2018
Supporting Patients & Carers
COPING TOOLS
- Empowering the caregiver | Author: Gail Sperling | Type: Video source | Source: CML Horizons 2018
Supporting Patients & Carers
CANCER & WORK
- Working with a chronic cancer: Challenges and ways forward | Author: Ward Rommel | Type: PDF file | Source: CML Horizons 2016.
Supporting Patients & Carers
CANCER & WORK
- Working with a chronic cancer: Challenges and ways forward | Author: Ward Rommel | Type: Video resource | Source: CML Horizons 2016.
Acknowledgement
We would like to thank the following for their support:
