Become an Advocate
Brochures and Posters
- Tri-fold Brochure – “What are the Ehlers-Danlos syndromes?” (Color); click here for black & white printable version
- Tri-fold Brochure – “What are the hypermobility spectrum disorders?” (Color); click here for black & white printable version
- Poster – “What are the Ehlers-Danlos syndromes?” (11″x17″); click here for A3 sized
- Poster – “What are the hypermobility spectrum disorders?” (11″x17″); click here for A3 sized
- Handout to share with medical professionals
Give your medical professionals a hand with this 2017 Ehlers-Danlos Classification Handout - EDS Wallet Card — emergency information for those with EDS
Eupati Open Classroom
The European Patients’ Academy (EUPATI) is a pan-European project implemented as a public-private partnership by a collaborative multi-stakeholder consortium from the pharmaceutical industry, academia, not-for-profit, and patient organizations. Their Patient Expert Program has been transformed into an online, on-demand learning opportunity on the EUPATI Open Classroom. There are a number of modules available, with more being added in the near future. Each topic contains several courses, which a learner can complete online and receive a certificate.
https://learning.eupati.eu/
Rare University
From Global Genes, “Allies in Rare Disease” (powered by teachable).
https://rareuniversity.com
BMJ
Since starting out as the publisher of a single medical journal in 1840, BMJ has developed a unique range of expertise to meet today’s global healthcare challenges. If you’re living with a disease or have experienced a significant illness or medical condition, a carer of someone living with a disease, an advocate acting on behalf of a community group, or you play a leading part in advocating for collaborative participation and partnership in healthcare we’d like to invite you to take part in a unique initiative. The BMJ has committed to improving the use of community collaboration in it’s research, education, analysis, and editorial articles by asking those living with diseases to comment on them. We need your help to make these changes.
https://www.bmj.com/about-bmj/resources-reviewers/
Rare Advocacy Movement
The Rare Advocacy Movement (RAM) is an advocacy initiative focused on documenting the evolving complex structure and unique dynamics of the rare disease advocacy landscape. RAM is a cultural awakening initiated by seasoned advocacy leaders that have vowed to remain transparent, clarify misunderstandings and to ensure that the rare disease community is not overlooked, ignored or misrepresented.
https://www.rareadvocacymovement.com
Rare Disease Legislative Advocates
Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. By growing the advocacy community and working collectively, we can amplify our many voices to ensure that those living with rare diseases are heard in state and federal government.
https://rareadvocates.org/advocacy-tools/
International Advocacy for Rare Diseases
EURODIS Open Academy are offering a free course on International Advocacy for Rare Diseases. If you want to know what the most important institutions and initiatives for international advocacy are and learn how you can join the international advocacy efforts to secure a brighter future for the 300 million people living with a rare disease, this online course covers this.
https://openacademy.eurordis.org/courses/international-advocacy-for-rare-diseases/
