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Too Rare to Care: A "RARE" Documentary

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"RARE" follows five unique stories of five unique rare disease families on their diagnostic and cure odyssey. This documentary takes us from the intimate battles fought daily to the larger challenges facing the entire rare disease community and ultimately to the hope offered by the science of cell and gene therapy.

Rare disease, in the aggregate, is a health crisis, but RARE hopes to shed light on the struggle of these families. There are new and emerging therapies available that can improve the quality of life for the individuals with rare disease and their families, but we need to amplify the rare disease parent advocacy that is forcing legislative, scientific, and other industry leaders to take notice.

The families we profile in this film are the pioneers on the frontline of this battle, demanding change and action to save their child and every child born tomorrow with a rare disease.

Sign up here for updates and visit our site for more information on our families and rare disease.


  • Jared Shay
    • $50 
    • 2 mos
  • David Segal
    • $500 
    • 2 mos
  • Anonymous
    • $1,000 
    • 2 mos
  • Beccah Lanni
    • $50 
    • 2 mos
  • Susan Ruediger
    • $500 
    • 3 mos

Organizer and beneficiary

Emma Montgomery
Rockville, MD
lainey moseley

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