CGD RT joined representatives and patients from many other rare disorder charities at the House of Commons to mark Europe’s first Rare Disease Day on the 29th February
The event organised by the Genetics Interest Group (GIG) and Eurordis was a wonderful opportunity to meet members of parliament and other policy makers and make the voice of people affected by rare disorders better heard. GIG is an umbrella organisation representing over 130 UK charities that support people affected by genetic conditions and CGD RT has been a member for almost ten years.
The CGD Research Trust was well represented – three staff attended and two MP’s looked in at their invitation, both of whom have a personal interest in the area of genetics – Stephen Hammond, Wimbledon and Robert Key, South Wilts. CGD RT director, Liz Nelson, was attending as a trustee of GIG. Susan Walsh, CGD RT’s medical officer and Rosemarie Rymer, general manager, both appreciated the opportunity to meet new people and catch up with familiar faces.
Hot topics were equal access to health services and the development of centres of expertise, the need to provide funds for better care and more research and increasing expertise among carers and healthcare professionals in the UK for rare disorders. It is hoped that policy decisions can be made on a European basis to ensure smooth passage of developments that might lead to new treatments and cures.
Alistair Kent, the Director of GIG, emphasised the scale and impact of rare conditions in the UK and the need to raise awareness, “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.’
Tanya Collin-Histed, executive Director at the Gauchers Association, a disease that affects 245 people in the UK spoke about the difficulties people with rare diseases face – problems that would be recognised by anyone affected by CGD. Similarly, CGD families would recognise the benefits that access to specialist centres provides.
The event in London on the 26th February was just one of many pan European events to highlight the impact of rare disorders on individuals, families and carers. They are the start to what will become an annual event – A Rare Disease Day. If you want to attend the next event then please let us know.
For more information, please go to www.gig.org.uk
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
© 2001-2007 The Chronic Granulomatous Disorder (CGD) Research Trust
Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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