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.
Guest Blogger: Findacure – Understanding Common Through The “Rare” #Rare #RareDisease http://t.co/NvCA6SO16Y via @orphandruganau
— OrphanDruganaut Blog (@orphandruganau) August 25, 2014
Top 17 Trends in the Orphan Drug Industry http://t.co/Q5rUiy7KVp via @@chrishackettcp — OrphanDruganaut Blog (@orphandruganau) August 24, 2014
Denis Costello (@rarecare) is the Web communications officer with Paris-based nonprofit EURORDIS (Rare Diseases Europe).
Nice piece in @IrishTimes about launch of Irish #RareDisease national plan http://t.co/FaItLlw0Va
— Denis Costello (@rarecare) July 4, 2014
Learned alot today at very motivating meeting in #Zurich with European Inclusion Body #Myositis patient groups #sIBM #RareDisease — Denis Costello (@rarecare) July 1, 2014
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.
NIH: Keep Hope Alive and Restore Lifesaving Study http://t.co/z2SP4J3u0u via @Change
— Kari Ulrich (@FMDGirl) June 18, 2014
Fibromuscular Dysplasia- Patient Experience, Struggles, and Living with FMD | Patient Commando http://t.co/9SJN19BAbG via @patientcommando — Kari Ulrich (@FMDGirl) June 10, 2014
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.
Trends in #RareDiseases,or why the #icebucketchallenge is a cold dash of temporary relief. H. Etchevers http://t.co/Z2xlkqkyUE via @guardian
— marianne vennitti (@mvennitti) August 24, 2014
Living with #Cryoglobulinemia #vasculitis means taking a bag of cover ups wherever I go. https://t.co/3JnKGhq9S6 #RareDisease — marianne vennitti (@mvennitti) August 24, 2014
Stephanie Fischer (@SDFatPhRMA) is the senior director of communications at PhRMA.
Check out @PhRMA‘s new Innovation Hub at http://t.co/dECb5JxDVN for stats & infographics (inc the pipeline of hope) on #biopharma innovation
— Stephanie Fischer (@SDFatPhRMA) August 25, 2014
Five myths about #ALS http://t.co/5gHFuQKcSG via @washingtonpost #icebucketchallenge — Stephanie Fischer (@SDFatPhRMA) August 24, 2014
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.
Familial Hypercholesterolemia Canadian patients, families and friends. Join Network. Please check out at: https://t.co/6BGj2hsfuE
— Durhane Wong-Rieger (@Durhane) August 14, 2014
Rare disease patients will have direct input to Health Canada on drug approval Pilot happening NOW chttp://www.digitaljournal.com/pr/2106299 — Durhane Wong-Rieger (@Durhane) August 6, 2014
[Photo from Flickr user Kymberly Janisch]