Health IT, Pharma, Policy

Beyond the ice bucket: Orphan disease patient advocates you should follow on Twitter

The viral marketing campaign for ALS known as the ice bucket challenge has boosted the […]

The viral marketing campaign for ALS known as the ice bucket challenge has boosted the profile of rare disease philanthropy and permeated pop culture in a way that orphan diseases typically don’t, from the sublime to the ridiculous. Of course, ALS is just one of the 6,600 rare diseases in the world. Rare diseases affect as many as 30 million Americans, according to the NIH. Earlier this year, Total Orphan Drugs assembled a list of orphan disease advocates on Twitter. Here are some of them:

Ann Teresa-Cusenza (@orphandruganau) is managing editor for the blog, Orphan Druganaut.

Denis Costello (@rarecare) is the Web communications officer with Paris-based nonprofit EURORDIS (Rare Diseases Europe).

Kari Ulrich (@FMDGirl) has trained as an RN and is a rare disease patient advocate with fibromuscular dysplasia. In addition to setting up a patient advocacy organization, she started an online petition last year to the National Institute on Aging, a part of the National Institutes of Health, over its decision to stop collecting data for a long-running observational study of fibromuscular dysplasia and four other rare diseases.

Marianne Vennitti (@mvennitti) is the founder of @allianceforcryo. She also has cryoglobulinemia, which causes plasma to become as thick as maple syrup and deposit clumps in blood vessels. It can limit blood flow, increase the risk of blood clots, blocked arteries, and damage to skin, joints, muscles, nerves, kidneys and liver.

Stephanie Fischer (@SDFatPhRMA) is the senior director of communications at PhRMA.

Durhane Wong-Rieger (@Durhane) is the president of the Canadian Organization for Rare Disorders. She is also president and CEO of the Institute for Optimizing Health Outcomes.

 

[Photo from Flickr user Kymberly Janisch]

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