Genetic Alliance UK in Scotland:
Rare Disease Day celebrations in Scotland
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 MSP, who is a member of the Scottish National Party and an MSP for the Lothians.
Dr McKee pointed out that Rare Diseases are, collectively, not rare and affect between 300,000 and 370,000 people in Scotland i.e. around 7% of the population. He announced that the motion put before the Scottish Parliament the previous week had received cross-party support. Dr McKee then commented on how Scotland is well placed to play its role in the research and development of treatments for rare disease, as it is one of the world's leading bioscience centres.
He said "with over 600 organisations and more than 30,500 people, Scotland has one of the most advanced life science clusters in Europe. Over 70% of Scotland's core life science organisations currently focus on human healthcare."
Melissa Hillier, Genetic Alliance UK's assistant director, then introduced the Rare Disease UK campaign and explained why Rare Diseases are a political issue as well as an emerging public health issue. She highlighted the need for a strategic approach to the provision of healthcare for rare disease patients, especially those without a diagnosis. She then outlined how the national plan could build on existing models of best practice to maximise the efficient use of scarce resources.
The event got into full swing after the speeches and was attended by around 50 people including researchers such as Professor Sir Ian Wilmut (the scientist who cloned Dolly the sheep) and Professor Irwin McLean who a Professor of Human genetics and studies genetic skin disorders such as eczema and epidermolysis bullosa. Other guests included charities 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.
Many of the people who attended the event have reported back that it was an excellent networking opportunity for them, and Gillian and I have certainly had our work cut out since with queries and interest shown by MSPs and other stakeholders that could not attend on the night.
Of course the aim of this event was to secure interest in the development of a National Plan for Rare Disease for the UK that adequately reflects the needs of all its member nations. As a member of the virtual patient panel in Scotland points out below, inequity in healthcare is a crucial issue for many rare disease patients:
"From my own experience we are regarded as a sideshow that the health service can do little for, other than palliative treatment and it has been encouraging to have a voice at last. Given that stem cell research is to be restarted in the US by President Obama, perhaps we can look forward to some better times or at least participate in meaningful research. It is also important that treatments available in Europe are made available in the UK as well. This is an area where Alphas [a rare disease] in the UK are at a distinct disadvantage. Without some voice in the corridors of power we will continue to be largely ignored." JL, Aberdeen
To date the motion put before the Scottish Parliament has been signed by 21 MSPs. If you want to know more about the plan of action for Rare Disease UK in Scotland please email Claire or phone 0131 651 4805 or 07508 503 100.