Latest News


EMA to relocate to Amsterdam

Date: 21 Nov, 2017  No Comments  ASUK Author

The European Medicines Agency is currently located in London in the UK and the Agency is responsible for the scientific evaluation, supervision and safety monitoring of medicines in the EU. The EMA covers 28 EU Member States, as well as the countries of the European Economic Area, by ensuring that all medicines available on the


ASUK in Barcelona at the World Orphan Drugs Congress

Date: 14 Nov, 2017  No Comments  ASUK Author

ASUK Chief Executive, Ann Chivers is attending the World Orphan Drugs Congress in Barcelona from the 13th – 15th November 2017. Discussing the importance of orphan drug and clinical development for all rare diseases. Ensuring at the start of any development families and individuals affected are involved and engaged. Follow us on twitter @AS_UK for


Wow! – Listen to Inspirational Kion on BBC Radio 2

Date: 14 Nov, 2017  No Comments  ASUK Author

Listen to inspirational Kion (pictured below) who featured on BBC Radio 2’s Chris Evans morning show, on Monday 13th November 2017. Follow the link below to the recording, if you move the iplayer to 2 hours 1 min you can hear from Kion speaking about having Alstrom Syndrome and the work of Alstrom Syndrome UK to promote


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


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