Tuesday 13th December 2016
News
Monday 28th November 2016
Get involved in Rare Diseases Day and help represent Scleroderma
SRUK will be supporting Rare Diseases Day February 2017.
Monday 3rd October 2016
Scleroderma blog by Alison Juggler
Scleroderma is a rare disease that affects the immune system. Your body starts to attack healthy tissue and produce excess collagen, affecting the skin, joints, blood vessels, tendons and internal organs (eek!). The resulting scarring and stiffness varies in severity, but it can be disabling and even life-threatening when you have the most serious type of of scleroderma: systemic. Yep, that’s what my daughter
Wednesday 28th September 2016
Nintedanib Receives Orphan Drug Designation for Systemic Sclerosis
The FDA has granted Orphan Drug Designation to Boehringer Ingelheim’s nintedanib for the treatment of systemic sclerosis (SSc), also known as scleroderma, including associated interstitial lung disease (SSc-ILD). - See more at: http://www.pharmacytimes.com/product-news/nintedanib-receives-orphan-drug-designation-for-systemic-sclerosis#sthash.5ACj39Ga.dpuf
Wednesday 14th September 2016
Edgar Stene Prize Competition 2017 launched
The Edgar Stene Prize Competition 2017 is for people with rheumatic and musculoskeletal diseases (RMDs) to write about their personal experience and submit an essay by 31st December 2016. Launched by National organisations of people with arthritis/rheumatism (EULAR) and across Europe (PARE).
Monday 5th September 2016
SRUK First Annual Conference
Our first ever Annual Conference was held in August 2016 and was a great success. It brought together key industry leaders and medical professionals to present on the latest research, methods of diagnosis, treatments and managing the condition.
Monday 5th September 2016
Fantastic community event in Nottingham
Nottingham local councillor Corall Jenkins recently held a brilliant community event in memory of her husband Stan, who sadly passed away from scleroderma.
Sunday 4th September 2016
Scleroderma Clinical Research Study Enrolment
This information is intended for residents of the UK Now Enroling Patients with Diffuse Cutaneous Systemic Sclerosis (dcSSc) also called Scleroderma Have you or someone you know been diagnosed with diffuse cutaneous systemic sclerosis? Would you/they be interested in participating in a clinical research study?
Thursday 25th August 2016
Finding strength in numbers
“Strength in numbers”: an oft used phrase, but like many such clichés it has evolved to mean different things to different people. For me, as Chief Executive of Scleroderma & Raynaud's UK (SRUK), the only UK Charity dedicated to improving the lives of people with these debilitating autoimmune conditions, ‘strength in numbers’ has multiple meanings. Read Sue Farrington's interview with National Voices.
Friday 22nd July 2016
Increasing Awareness
During June we launched our first public facing awareness campaign to highlight the signs and symptoms of Raynaud’s and the link between Raynaud’s and Scleroderma.