Yale School of Medicine and Yale Medicine Present: "What it means to be Rare: A Webinar about Rare Diseases"

In recognition of Rare Disease Day, this free webinar will help you gain perspective on the challenges faced by people with rare diseases in access to diagnosis, treatment and health care.

Join us on Zoom – Join our Cloud HD Video Meeting

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Patient Panel:

1:00 – 2:30PM

Hear patients with rare disorders explain their experiences.

Sharing are patients with:

-Congenital Lipodystrophy

-Pompe Disease

-Porphyria

-LCHAD Deficiency

-Familial hypercholesterolemia

-OTC Deficiency

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2:45 – 4:00PM

Yale genetics, counselors, specialists, social workers & research associates take your questions.

Panelists are experts in:

-Genetics and Rare Disease

-Cystic Fibrosis

-Metabolic Bone Disease

-Gaucher and Rare Liver Disease

-Differences in Sexual Development

-Hereditary Arrythmia

-Others