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This website has been devised by Judith Calder, a Degos patient in Sussex, England, with the full co-operation and support of
Professor Christos Zouboulis and Dr Athanasios Theodoridis, Dessau Medical Centre, Germany
Dr Peter Coburn, Southlands Hospital, Sussex UK
Dr Lee Shapiro, Steffens Scleroderma Center, Saratoga Springs NY USA
Dr Aixa Toledo-Garcia, The Center for Rheumatology, LLP, Albany, NY USA
Dr Patrick Whelan, Mass General hospital for Children, Boston MA USA
Dr Noah Scheinfeld, Midtown West, NY USA

All these doctors may be contacted via the Contacts page on this site.

There is information and space for patients, their carers and relatives, their doctors and researchers.

The Degos Disease Support Network is a contact group, a support group and an information hub for those affected by Degos disease.

Medical professionals who are seeking help will find information, links to medical sites and to ongoing research. More photographs and biopsy plates on the Images pageMore photographs and biopsy plates on the Images page

As Degos disease is an extremely rare disease, we welcome input from those affected by it. We also welcome donations to help with the running of the Support Network and to assist the research into the disease.

Last updated 4th December 2014. Originally added 23rd July 2010.

Updates

This Website

This site is funded by the private investment of Judith and Alan Calder, and is run with no subscriptions or fees. All donations are invested in medical research into Degos Disease.

The information provided on www.degosdisease.com is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her physician.

Our Website does not host any form of advertisement.


This website is accredited by Health On the Net Foundation. Click to verify.

We comply with the HONcode standard for trustworthy health information: verify here.


This site is listed in the University of Nottingham’s OMNI catalogue of hand-selected and evaluated online medical information.


This site is listed in the National Library for Health. The NLH Skin Disorders Specialist Library is a “one-stop” web resource bringing together high quality, evidence-based information on all of aspects of skin disorders and their treatment and management. The Skin Disorders Specialist Library is funded by the NHS to meet the information needs of NHS health care staff, but is also open to patients and the public.


The Degos Disease Support Network is an associate member organisation of the European Organisation for Rare Diseases (Eurordis). With more than 300 direct member organisations, Eurordis is now recognised and listened to as the European organisation specialised in the needs of patients with rare diseases.


The Degos Disease Support Network is a member organisation of Rare Disease UK, an alliance of key stakeholders brought together to develop a national plan for rare diseases in the UK. It is a joint initiative of the Genetic Interest Group (the UK alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders) and others in response to unmet health care needs of hundreds and thousands of families who currently struggle to get access to integrated care and support from the NHS.

The Degos Disease Support Network is listed in the Organisational Database of the National Organisation for Rare Disorders (NORD), based in the USA. NORDNORD

Last updated 6th January 2011. Originally added 23rd July 2010.
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