Rare Disease UK
REMINDER: Joint RDUK and AMRC workshop on rare disease research – 9th December in London
Share your experience and inform policy
Dear RDUK member,
A reminder to ensure you are aware that we are holding a joint workshop with the Association of Medical Research Charities (AMRC) on Thursday 9th December 2010 in Whitehall, London.
The workshop will examine the challenges funders of research into rare diseases face in the UK.
Currently, as many of you know, the UK and many other European have no strategic approach to delivering the best course of treatment and support for all patients with rare conditions. This can result in many patients being left to find their own way through the maze of services and information that is available without any clear guidance or support.
Professor Robert Degos 1904-1987
The American College of Rheumatology (ACR) has formally approved the Degos conference as an official Study Group of the ACR and we have meeting space at the Boston Convention Center for the evening of Friday, November 9 2007 as part of the ACR annual conference.
Sandra Clancy (mother of a Degos patient) has secured the famous Ether Dome at MassGeneral Hospital for that afternoon.
The 1st International Meeting on Degos Disease was held at Department of Dermatology, Venereology and Allergology, Charité-Universitätsmedizin Berlin on March 18-19 2005.
A DVD of the meeting is available from Matt Schuller at matschu@comcast.net if you are in the USA. Please let me know at judith@degosdisease.com if you are in Europe or elsewhere and I will send you one.