Become a patient advocate

Join EDS ECHO Advocacy: a free to join, six-week virtual program, delivered via the zoom platform for those wishing to advocate for individuals with EDS and HSD.

This EDS ECHO program is designed to create active advocates around the world who are willing to help raise awareness of EDS and HSD.

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 organisations. We focus on education and training to increase the capacity and capability of patients to understand and contribute to medicines research and development and also improve the availability of objective, reliable, patient-friendly information for the public.

From Global Genes, “Allies in Rare Disease” (powered by teachable).

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 a patient living with disease or have experienced a significant illness or medical condition, a carer of a patient, a patient advocate acting on behalf of a patient group, or you play a leading part in advocating for patient 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 relevance and patient centredness of its research, education, analysis, and editorial articles by asking patients to comment on them. We need your help to make these changes.

The Rare Advocacy Movement (RAM) is a patient advocacy initiative focused on documenting the evolving complex structure and unique dynamics of the rare disease patient 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.

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 patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government.