Date & time: 
Saturday, 25th February 2012 (All day)

Preliminary programme: Prof. Zouboulis will be presenting a celebration of Rare Disease Day in Europe, on 25th February at Dessau.Preliminary programme: Prof. Zouboulis will be presenting a celebration of Rare Disease Day in Europe, on 25th February at Dessau.

Letter from Prof Zouboulis:

Dear Mrs. Calder,

On February 29, 2012 ACSHE e.V. will celebrate around Europe the 2012 Day of Rare Diseases. In Germany the central celebration will take place in Berlin.

However, on Saturday, February 25, 2012 ACHSE e.V. will have peripheral celebrations, among them in Munich, Hanover and Dessau.

Date & time: 
Thursday, 9th December 2010 (All day)
Whitehall, London

Rare Disease UKRare 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.

Date & time: 
Tuesday, 16th November 2010, 9:30am
Nowgen Centre, Manchester, 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.

Date & time: 
Friday, 9th November 2007 (All day)
Boston Convention Center, USA

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.

Date & time: 
Friday, 18th March 2005, 1:00pm - Saturday, 19th March 2005, 12:00pm
Charité-Universitätsmedizin, Berlin

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 if you are in the USA. Please let me know at if you are in Europe or elsewhere and I will send you one.

See our Facebook Group page: Degos Disease Support Network on Facebook

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