Advocate and patient partner

Expert Patient

It’s important for me to make sure I’m the best possible rare disease advocate I can be, and to always have current and scientifically sound information.

I invest a lot of time in what I call my continuous education:

  • I attend conferences and scientific/medical webinars (Ehlers-Danlos syndromes, rare disease, dysautonomia, COVID-19, etc.)
  • I also attend conferences and webinars on advocacy and communication (HealtheVoices, Social Health Network‘s Connexion, Global GenesPatient Advocacy Summit, etc.)
  • I read a lot of scientific papers: I regularly receive PubMed publication alerts for most of my diagnoses (hEDS, gastroparesis, keratoconus, etc.)
  • I discuss with experts when I have the chance
  • I completed the Ehlers-Danlos Society‘s Advocacy ECHO program in 2021

Having varied interests, I’m a bit of a jack of all trades. Being a perfectionist, I still stay focused!