The fight against rare diseases starts with listening to the millions of people who live with these conditions every day. Their personal experiences can inspire change, improve care, and lead to new discoveries.
Listen Here!
Stories With Impact
Every voice and every experience is unique. By sharing our stories, we represent a collective strength and create a groundswell that motivates change.
Every voice matters!
Check out the videos below to hear more about the issues important to the rare disease community.
Are you a patient, caregiver, family member, or friend impacted by a rare disease? By sharing your story, you can help:
Come Practice Your Pitch at Fast Forward for RARE
Stop
- Visit the Fast Forward for RARE video suite at an upcoming rare disease or patient conference
Record
- Share your story on camera
- Get immediate feedback and tips
Fast Forward for RARE
- Apply what you learn to inspire action
- Share your story to raise awareness
- Speak with your legislators to advocate for policy change
- Receive a digital copy of your video and photo to share
Personalized Coaching
Our team of communication specialists is eager to provide you with the tools to feel prepared and comfortable advocating for your rare disease community.
Britta Dornan
Senior Director of Public Relations and Patient Engagement
