Get involved in Rare Diseases Day and help represent Scleroderma
What is Rare Diseases Day?
SRUK will be supporting Rare Diseases Day February 2017 to raise awareness amongst the public and decision-makers about rare diseases and their impact on patients' and carers lives. This includes Scleroderma and other conditions. This would include policy makers, public authorities, industry representatives, researchers, educators, health professionals and anyone who has a genuine interest in rare diseases.
Show your support
Help raise awareness of Scleroderma as a rare disease and talk to your friends about how a condition you have impacts your life. Why not send in your stories or photos by post, or email us and we can post your stories and photos on our website or social media (contact details found at the end of article).
Get involved with Rare Diseases Day and Raynaud's Awareness Month in February 2017 on social media with Facebook, Twitter and YouTube. Follow us and share the posts. There are also some Rare Diseases Day resources that you can print out including posters to pin up, and banners which can be found on the Rare Diseases Day official website.
What is a rare disease?
In the EU, as many as 30 million people may be affected with a rare disease. 80% of rare diseases
have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. Relatively common symptoms can often hide underlying
rare diseases. This leads to misdiagnosis and delaying treatment and can result
in the patients quality of life being affected, often a lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
Why we support it
There are over 6000 rare diseases, for most there is no cure, and this includes Scleroderma. Join us in making the voice of rare diseases heard. SRUK are supporting the day to represent people with Scleroderma and their carers. The more people who understand the conditions the more likely action will be taken including research to find a cure, support provision across the community and policy changes for better lives when living with the conditions.
Contact: Rare Diseases Day, SRUK, 18-20 Bride Lane, London, EC4Y 8EE. Email us at: firstname.lastname@example.org
Help represent Scleroderma as a rare disease.