Every
Voice

Matters.

 

Every
Voice

Matters.

 

Every
Voice

Matters.

listening
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.
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Every voice matters!

Check out the videos below to hear more about the issues important to the rare disease community.

Come Practice Your Pitch at Fast Forward for RARE
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Stop
  • Visit the Fast Forward for RARE video suite at an upcoming rare disease or patient conference
record
Record
  • Share your story on camera
  • Get immediate feedback and tips
fast forward rare
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.

Close up of a man
Adrian Palau-Tejeda
Diversity Inclusion Advocacy Fellow
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Lindsey Cundiff
Associate Director of Patient Engagement
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Brenda Colmenares
Communications Manager
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Swapna Kakani
RDLA State Advocacy Fellow
Britta Dornan
Britta Dornan
Senior Director of Public Relations and Patient Engagement
Shannon von Felden
Shannon von Felden
RDLA Program Director
Katelyn Laws
Katelyn Laws
RDLA Program Coordinator
Mary Morlino
Mary Morlino
Patient Engagement Consultant
Chris Smith
Chris Smith
President and CEO
Katie Burns
Katie Burns
Vice President
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Bethany Firem
Patient Advocacy Director
Allison Bones
President/CEO
women smiling
Kylie Barber
Medical Foods Policy Associate