A Rare Day for Rare Disease
UK reception in the House of Commons to celebrate first European Rare Disease Day - 29th February 2008
Evan Harris MP (with Alastair Kent, Director of GIG, right) opens Rare Disease Day reception at the House of Commons.
To mark Europe’s first Rare Disease Day 29th February 2008 over 200 patients and representatives from all over the UK travelled to Westminster to meet parliamentarians face to face to raise the awareness of the needs of patients with rare diseases and to discuss policy developments at a UK and European level. Liz Glenister was there to represent HPTH UK and was made very welcome by members of The Genetic Interest Group (GIG) who organised the event in tandem with Eurordis, their European partner.
GIG, to which HPTH UK now belongs, is a national alliance of patient organisations which support children, families and individuals affected by genetic disorders in the UK, while Eurordis (to which we belong as affiliate members of HPTH Europe) is the European alliance of patient organisations and individuals active in the field of rare diseases).
The issues discussed were ones with which HPTH UK members will closely identify as we campaign for better treatment and guidelines:
Although the UK does have specialist centres for some rare diseases these are not accessible by all and Tanya Collin-Histed, Executive Director at the Gauchers Association, a disease that affects 245 people in the UK, spoke about the difficulties that people with rare diseases face, as well as the benefits some patients had gained through receiving treatment and care at specialist centres. “Being able to see specialists in a centre dedicated to our condition has been of enormous benefit to patients. They are able to see people who look at their condition as a whole, and who know about the effects that it can have. They also have access to the latest treatment developments. It has been a lifeline to patients.” Patients with rare conditions in the UK and across Europe are now joining together to call for equal access to these health services.