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A Rare Day for Rare Disease

UK reception in the House of Commons to celebrate first European Rare Disease Day - 29th February 2008

Evan HarrisEvan 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).

Alastair Kent, Director of GIG, said “Raising awareness of genetic disorders is vital. Although alone they are rare, together there are over 3.5 million people in the UK affected. Many patients have similar issues and concerns and together we can help patients to access the NHS in a fair and equitable manner”.

The issues discussed were ones with which HPTH UK members will closely identify as we campaign for better treatment and guidelines:

 

  • The importance and need of funded research and care in the rare disease area
  • The need for specific health policies, support networks, best practice guidelines, and increased expertise among carers and healthcare professionals in the UK in rare diseases.
  • The need to ensure common policy guidelines are developed and shared everywhere in Europe: specific actions – in areas such as research, centres of expertise, access to information, incentives for the development of orphan drugs, screening.

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.


A European Parliament Rare Disease Communication was published in November 2007 and this document discusses the possibilities for improving healthcare for patients with rare diseases in Europe by sharing information and knowledge between experts and between countries. For more information
http://ec.europa.eu/health/ph_threats/non_com/cons_rare_dis_en.htm

Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity. There are over 8000 rare conditions identified, and they affect over 3.5 million people in the UK and over 300 million people in the EU at some point in their life. 1 in 17 people will develop a rare condition at some point during their life. Patients with very rare diseases, and their families, are particularly isolated and vulnerable and a day focussed on rare diseases can bring hope, as well as information to these individuals.

Rare Disease Day will happen every year from 2008 onward to raise awareness of rare disorders and the impact that they have on patients’ lives among the media, decisions makers, health professionals and the general public. If you want to attend the next event then please let us know.


 


   
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