I know that my family benefited greatly from the information provided at this forum, as well as, were helped with their understanding, by meeting others in the same ‘scleroderma boat’.
But, hats off to Anne, she DID it, with her devoting and loyal husband, Harry, supporting her throughout. I often joked with Anne that ‘I needed a Harry’ as their unconditional love for each other was so heart warming and endearing.
Anne was great at bringing everyone together, united by our rare diagnosis.
With an acknowledgement 'dedicated to the memory of Anne, founder of the Raynauds and Scleroderma Association UK, who raised over 10 million pounds for SSc research, education and advocacy in her lifetime.'
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice