Latest News

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

News, Views and Useful Links! (April edition)

Date: 13 Apr, 2017  No Comments  ASUK Author

You can find our latest News, Views and Useful Links here From everyone at ASUK we would like to wish you an Eggciting Happy and Healthy Easter! ASUK would love to hear from you, send us your news, articles or any links that you think others would find useful.  Get in touch by email

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

Happy Rare Disease Day!

Date: 15 Oct, 2015  No Comments  adm1n

Today, 28th February 2017 is Rare Disease Day. Rare Disease Day takes place on the last day of February every year to raise awareness about rare diseases and their impact on patients lives. There are many events which take place around the world. This year’s theme is ‘Research’ with the slogan ‘With research, the possibilities