Patients With Rare Diseases Turn Into Lobbyists


Patients with rare diseases turn into lobbyists

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Shira Strongin injects fondaparinux, a blood thinner she uses to prevent transient ischemic attacks, as her friend Emily Muller watches. (H. Darr Beiser/Kaiser Health News)(Photo: TNS)Buy Photo

Wearing a blue T-shirt and worn jeans, Marc Yale stood near the welcome pole at the annual Rare Disease Legislative Advocates conference handing out money.
Envelopes in his left hand held $750 checks to help patients with a rare disease cover the cost of a whirlwind trip to the nation’s capital. The money was donated by the pharmaceutical industry.
“Obviously, we wanted to send as many patients to …

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