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WASHINGTON — 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 advocate on Capitol Hill as possible,” said Yale, the director of the International Pemphigus & Pemphigoid Foundation.

 

Yale collected $7,500 in donations from a specialty pharmacy and a drugmaker that manufactures treatments for the rare diseases that afflict his members. The money was intended to help offset patients’ travel expenses.

 

The pemphigus/pemphigoid group, representing people with a rare autoimmune disease that often affects the skin and mucus membranes, was just one of many small patient advocacy organizations represented at the late February conference, where sick patients and family members learn how to lobby and test their new skills. Rare diseases in the U.S. are defined as those affecting fewer than 200,000 people.

 

The pharmaceutical industry is teaming up with advocacy groups that are training and even paying for patients who need their medicines to promote their causes in Washington.

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