This past Wednesday our very own head of engagement and development
@Amy_Vic_Baker took part in an online “roundtable" discussion with three other leading experts in all aspects of scleroderma. The discussion, organised by our partner Actelion, took place on Twitter using the hashtag #SclerodermaChat and covered every aspect of the disease - from medical research and treatments to the experience of patients and carers.
The other participants included Annelise Roennow of the Federation of European Scleroderma Associations (FESCA), Spanish rheumatologist Dr. Juan Ovalles, and patient-advocate Lynn Steblecki who was diagnosed with scleroderma in 2001. 150 people joined in, Tweeting a total of 465 messages about the issue. Here are some highlights of the conversation that took place:
We fund research into several of these solutions, which aim to improve the lives of those with the condition and lower the cost of treatment long-term. You can help us increase the number of studies we fund by
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By working in partnership with other rare condition organisations, we've developed 12 recommendations to help
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