Top 10 Things We Learned at Patient Advocacy Summit

September 21, 2022

It’s been a week since the Patient Advocacy Summit wrapped, and the Global Genes staff took a few days off to recover, and to reflect on what we learned at the Patient Advocacy Summit. What did you learn? Please share!

10. Laughter and sarcasm is a great coping mechanism to help you move forward. It also helps you cope with the challenges. It allows us to approach serious topics in a more lighthearted way. – Deborah Vick, Parenting While RARE

9. People will forget what you said, but people will never forget what you did or ever forget how you made them feel. – Maryann Wahmann, Finding & Retaining Volunteers

8. We’ve all been given the opportunity to advocate in our own way. – Overheard at PAS (was this you? let us know!)

7. Connections can lead to more than understanding each other. – Overheard at PAS (was this you? let us know!)

6. Having community saved me. Having connections with other moms that get it saved me. – Jessica Patay, Preventing Caregiver Burnout

5. We are here to fight and grow and make a better future for ourselves and our kids. – Effie Parks, Opening Remarks

4. You don’t have to compare and go through that comparative suffering or any of that. It’s to be supportive and realize everyone’s journey is unique and everybody has a story. – Billie Short, Undiagnosed? Misdiagnosed? Issues Related to Obtaining a Genetic Diagnosis

3. The real work is when you all talk to each other. – Daniel DeFabio, Opening Remarks

2. Don’t ever be intimidated by someone else’s story. – How to Be a Podcast Guest

1. You may not share the same role (i.e., caregiver, advocate, patient) or share the same diagnosis, but you can share the same path. – Tameka Diaz & Soniya Vadher-Patel

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