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Rare Disease UK, new project for young people

Date: 26 Jun, 2017  No Comments  ASUK Author

Rare Disease UK are coordinating a new project to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition. “This project will use a range of flexible and fun activities to engage with patients aged 5-17 and their siblings. These activities will take place at events coordinated


EURORDIS: access to medicines for all

Date: 15 May, 2017  No Comments  ASUK Author

EURORDIS has published their position on early access to medicines in Europe; arguing for compassionate use to become a reality so patients in urgent need get the help and treatments needed. Currently many medicines take far too long to develop which for many rare and complex conditions these medical interventions are needed now. A compassionate


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