Become a patient advocate

The first Patient Advocate ECHO program is full, but we will keep your information and be in touch when future programs are planned. Thank you.

This is a free-to-join program for patients with EDS and HSD.

We know that many of you want to know how to make a difference where you live, by raising awareness of EDS and HSD, and by forging change.

October 2, 2019 will see the commencement of the first Patient Expert ECHO: a focused six-week program to provide you with the tools needed to become a patient expert. The curriculum will cover advocacy, awareness, social media, public speaking, patient engagement, and more, so that you have the skills required to make the change.

We are looking for dedicated people to enroll into our Patient Expert ECHO, who have the time to commit to raising awareness, and to each of the following session dates:

Time: 12 noon EDT


  • October 2, 2019
  • October 10, 2019
  • November 6, 2019
  • December 5, 2019
  • December 13, 2019
  • December 16, 2019

The program content is currently only presented in English. 

Help us to create a dazzling global army and achieve world-wide awareness—and inevitably, a better quality of life for all who suffer from these conditions.

Our strength begins with hope, our hope begins with you.

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.