Awareness Animation is Launched!

Date: 10 May, 2017  No Comments  ASUK Author

ASUK is very excited to launch our Alström Syndrome ‘Living with a Rare Disease’ animation to raise awareness and understanding about this rare disease. Let’s all raise awareness and share this animation with friends, family, relevant organisations and professionals to spread the word about this ultra rare condition. Click on the image below to watch

ASUK joins UK Rare Disease Policy Board – improving services for All!

Date: 27 Apr, 2017  No Comments  ASUK Author

ASUK is delighted to announce we are now on the UK Rare Disease Policy Board! ASUK is involved to strive for improved services for all affected by rare conditions in the UK, ensuring everyones voice is heard.  The All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions published a report calling on the Department

ASUK upholds Information Standards for another year!

Date: 21 Apr, 2017  No Comments  ASUK Author

  ASUK is delighted to announce that we have upheld our Information Standards certification for another year! This means that you can be assured that the information we produce is accurate, reliable and trustworthy. What is the scheme? The Information Standard is a certification scheme for health and social care information producers. ASUK has been

Support Inspirational Family!

Date: 12 Apr, 2017  No Comments  ASUK Author

Support this Inspirational Family! Please support Sue Manzoor whose beautiful niece, Maariyah sadly passed away in December, shortly before her 17th birthday. In Maariyah’s memory the family have decided to raise awareness of Alström Syndrome by running in the Great Birmingham 10K run on Sunday 30th April 2017. A HUGE THANK YOU to the family for supporting

Prime Minister writes to ASUK!

Date: 11 Apr, 2017  No Comments  ASUK Author

Many of you will be aware that we have raised some concerns, alongside other charities about the likelihood of restricting NHS treatments for people with Alström Syndrome and other rare complex diseases. Alongside about 30 other health charities from the Specialised Healthcare Alliance, we voiced our concerns and signed a letter addressed to the Prime