Rare Disease


Rare Disease Implementation Plan Launched Today!

Date: 29 Jan, 2018  No Comments  ASUK USER

We are pleased to announce that The Department of Health and Social Care and NHS England have published plans to implement the UK Strategy for Rare Diseases.  You can view these plans HERE This is the implementation of the 51 commitments of the strategy for Rare Diseases in England. You can find out more about


It’s Christmas – let’s Read, Watch and Make Snow!

Date: 20 Dec, 2017  No Comments  ASUK Author

Over the festive period why not take the time to grab something warm and comforting and have a read of our latest winter newsletter, full of updates and family stories click HERE to view You can also click HERE to watch these truly insightful videos from parents, Clinicians and people affected by Alström Syndrome. Where


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