Share4Rare toolkit for patient advocacy
Advocacy resources
Regulatory Resources
EMA - European Medicines Agency
EMA - Conflicts of interest guidelines
EMA - Involvement of patients - Video
EMA - Involvement of patients - Presentation
EMA - Declarations interests practical guide-Presentation
EMA - e-DoI and e-CV submission
EMA - Handling competing interests
EMA - Public Declaration of Interests and Confidentiality Form V2. (Sample)
Orphan drug designations and authorisations
European Reference Networks for Rare Diseases
FDA draft guidance for RD: Common Issues in Drug Development for Industry
WDO - Priority Medicines Rare Diseases
Advocacy Resources
European Commission and Rare Diseases
Finding your tribe Rare Connect
Policy fact sheets for patient advocates
Advocacy grant timeline sample
EPF The added value of patient organizations
Additional Non-Profit Resources
Free Project Management Templates
Eurordis Rare Disease Info: Guidelines & Manual
Advocacy Tool Kit Skills and Strategies for Effective Self and Peer Advocacy
Methods used by advocacy groups
The best tools for advocacy campaigns
Advocacy action kit for Campaigns
Education resources
EUPATI Glossary on medical terms
EMA Glossary on regulatory terms
European Patients Academy (Eupati)
The Orphanet Database: Clinical Practice Guidelines for Rare Diseases
The IRDRC: Policies and Guidelines to maximize impact
Fundraising Resources
NORD’s A to Z Fundraising Guide
FSDH Rare Disease Day Fundraising Toolkit
Cancer Research Example on how to do your own fundraising
Advocacy Toolkits
EURORDIS - Advocacy tool kit to integrate RD into social services and policies
EURORDIS Toolkit to create information services for rare diseases
EUROPLAN – EURORDIS Tool Kit for National Conferences
Global Genes - Becoming an Empowered Patient : A toolkit for the Undiagnosed
NCATS - Toolkit for Patient-Focused Therapy Development
NIH - Toolkit for patient-focused therapy development
Arvo : International advocacy toolkit for researchers
Global Genes - Toolkit for patient advocate
Global Genes - Advocacy Toolkit for Support Groups
Global Genes - Raise Awareness for Your Rare Disease toolkit.
WHO - World Health Organization Advocacy Manual
WHO - Guide for Effective Programmes: Module 6: Policy and Advocacy