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 Genes‘ Patient 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, the SPOR Evidence Alliance‘s Patient and Public Engagement in Knowledge Synthesis in 2022 and obtained Social Health Network’s Patient Leadership Certification in 2024.
Having varied interests, I’m a bit of a jack of all trades. Being a perfectionist, I still stay focused!
