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"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK


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Rare Disease Day at the House of Commons

Rare Disease Day Logo

25th February 2009

The first of our three parliamentary events 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.

 Terrace Pavillion Main View 1

 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!

 Terrace Pavillion Main View 2


Ann Milton MP 

  Dr Evan Harris MP and Host
 Ann Milton MP

 Dr Evan Harris MP, Host

 Dr Peter Corry  Kerry Leeson, Alstrom Syndrome UK
 Dr Peter Corry

 Kerry Leeson, Alstrom Syndrome UK

Alastair Kent, Chair of Rare Disease UK
Alastair Kent, Chair of Rare Disease UK

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.

 Attendees  Mick and Ann Mason from FAPgene  Anne Carter and Angela Huber from the Tuberous Sclerosis Association with Attendees  Anne Begg MP and Attendees
 Bob Russell MP and Will Thomson from Klinefelter Organisation  Margaret Bowler from Myotonic Distrophy Support Group and Lord Graham of Edmonton  Lord Ward-Atherton and Colin Stone from Costello Kids Support Group  Nick Sireau from Alkaptonuria Society and Lord Ward-Atherton
 Margaret Ponder and Mark Todd MP  Genetic Interest Group Trustees  John Baron MP and Attendees  

See Photos from our other events: