Rare Disease

A Cambridge business created to improve the plight of patients with rare diseases worldwide has held its first conference and called for urgent action. The Cambridge Rare Disease network brought together scientists, business people, charities and families affected by rare and often untreatable conditions.

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  1. This is great news for the rare disease community! The parents in these communities often spend years fighting alone to find a diagnosis for their child. And then they continue to fight to find effective treatments and cures all while educating doctors who have no experience with rare disease. An AHC parent in Iceland has created a documentary with filmmaker Agusta Fanney and hopes to distribute it around the world. Please have a look and let’s keep spreading the word for rare diseases! http://www.gofundme.com/pippaswish2

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