Rare Disease Congressional Caucus

The Rare Disease Legislative Caucus aims to represent constituent concerns about disease and health-related issues, influence legislation to assist citizens and families affected by rare diseases, and to facilitate conversations between the medical and patient communities. This is a bipartisan committee established in 2009. This year the deposition in congress was meant to celebrate the 40th anniversary of the Orphan Drug Act of 1983, landmark legislation that has saved patient lives and proved the remarkable power of the rare disease patient advocacy movement to influence action on Capitol Hill. Speakers celebrated this lifesaving legislation and called on Congress to protect and expand the law. One of the speakers in congress was my daughter Cristina Casanova. She spoke as a mother of an NGLY-1 affected child (my grandson who died because of his affliction) but also as a patient herself with myasthenia gravis. I can say that I could not be prouder. I am attaching a link to some of the presentations. Cristina’s deposition starts at about the 25 minutes mark. https://m.youtube.com/watch?v=Nq2Lk3lKA1Q

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