Rare Disease Events 2009

UK Events in support of Rare Disease Day 2009

This year in the UK, Rare Disease UK and the Genetic Interest Group organised activities around International Rare Disease Day, which was on the 28th February. Three parliamentary receptions to raise the profile of rare diseases and to campaign for the development of a National Plan took place in London, Cardiff and Edinburgh.

25th February 2009 - House of Commons

The first event was held on 25th February at the House of Commons and over 200 patients, clinicians and industry representatives as well as over 20 MPs and Lords filled the room. As Ann Milton MP noted in her speech, it is not often that so many various stakeholders gather in a room over a Wednesday lunchtime!

It was a true measure of the support and commitment from so many that ensured the room was full. A national plan for rare diseases will improve the care, support and treatment for the over 3.5 million people currently living in the UK with a rare condition.

Go Top

3rd March 2009 - Welsh Assembly

The reception in Wales took place on the 3rd of March in the National Assembly for Wales in Cardiff and was kindly hosted by Lorraine Barrett AM, who has been a staunch supporter of our work for several years. The attendance was excellent with approximately 70 people present and representing several conditions including: Myotonic Dysprophy, Huntington’s Disease, Progressive Supranuclear Palsy, Prader-Willi Syndrome, Laurence-Moon-Biedl-Bardet Syndrome, British & Irish Porphyria Network and Stickler Syndrome.

The speakers were Dr Stephen Jolles, Immunologist from the University Hospital of Wales, Cardiff and Mr Kevin Harris, father of Rhys Harris, a little boy with NEMO. They both spoke on their professional and personal experiences, respectively on Primary Immunodeficiency Syndromes and their excellent talks were very well received by the audience.

Twelve Assembly Members attended the event and to date twenty five Members have subscribed to the Statement of Opinion (Early Day Motion) in support of better services for Rares Diseases.

Go Top

3rd March 2009 - Scottish Parliament

Rare Disease UK had its inaugural meeting in Scotland by way of a Parliamentary reception in the Garden Lobby of the Scottish Parliament on the 3rd March. 

The Rare Disease reception was sponsored by Dr Ian McKee, who is a member of the Scottish National Party and an MSP for the Lothians.  Around 50 people attended the event including researchers such as Professor Sir Ian Wilmut (the scientist who cloned Dolly the sheep) and Professor Irwin McLean, a Professor of Human genetics who studies genetic skin disorders such as eczema and epidermolysis bullosa.  Other guests included charity representatives such as the Myeloma UK, the Turner Syndrome Support Society and Confer (the Scottish charity for Neurofibromatosis).  Several people whose families are affected by rare disease attended, as well as representatives from the pharmaceutical industry and NHS Scotland.

Go Top

For more information on Rare Disease UK
Or to see more Photos from the events:

• House of Commons
• Welsh Assembly
• Scottish Parliament