Testimonials

“If you are looking for advice and help on how to tell your story, how to help others understand the need for more research, more funding, more support for families with rare diseases this is the perfect venue. [The] team at Rare on the Road give you all the tools you need to be a more effective communicator, and the whole experience reminds you that you are not alone on this journey. You are surrounded by friends who want to help you.” — Kevin M.

If you have considered why policy matters to your quality of life, this is the experience for you. If you have ever considered why your story matters to policymakers, this is the experience for you. If you have ever considered why policymakers need to be motivated by someone like you, this is the experience for you. — Jasmine G.

“This virtual session was engaging and thoughtfully prepared.  I found much of the content helpful and interesting, the speakers engaging and knowledgeable, and despite being virtual felt as though we were connecting.  I look forward to more opportunities like this.” — Deanna F.

“If you’re new to the Rare Disease community, whether as a patient, parent, caregiver or advocate, RARE on the Road is a great way to get an overview of effective ways to boost your advocacy skills.” — Allison B.

“Rare on the Road is a ‘must attend’ program for any individual, friend or family whose life has been impacted by a rare disease. Sign up and attend!” — David S.

This was my very first experience with something like this, but it contained a lot of great information.  I’ve never been a political person and I don’t understand all the language associated with it so this material helped me to get a little more understanding of how things work.  I still have so much more to learn and hope that I can have the opportunity to attend more events like this!” — Rhonda G.

“I believe RARE on the Road to be a great experience for anyone that has been affected by a rare disease and is looking to start their journey into advocacy or even for those advocates that want to engage with new people and learn about rare policy issues. This program provides something for everyone, in such a meaningful  impactful way! It’s only when you work and learn with other passionate individuals who understand exactly what you’ve gone through, because they’ve gone through it too, motivate that fight to make change happen! — Candace J.