Online chat with scleroderma experts on Twitter #SclerodermaChat
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
donating to help end scleroderma.
We support everyone affected by the conditions through our
free helpline and by providing access to information and services. Find out more by signing up to our newsletter or becoming a member of SRUK.
If you think you might have some of the symptoms of Raynaud's, which often precedes the onset of scleroderma,
take our online test to find out more.
You can find all the information you need about
scleroderma on our website. Whether your concerned you might have symptoms, or you're just curious to know more, we've got you covered.
By working in partnership with other rare condition organisations, we've developed 12 recommendations to help
achieve these goals. You can help us get there sooner by supporting us in any way you can.