Please have a look at our Video on Degos Disease. A few facts.

Added 18th August 2016.

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 Jessica Farrell, Albany College of Pharmacy & Health Sciences, Albany NY, USA
Dr Patrick Whelan, Mass General hospital for Children, Boston MA USA
Dr Cynthia Magro, Weill Cornell Medical College, New York USA
Dr Afshin Borhani-Haghighi, Dept of Neurology, Shiraz Univ of Medical Sciences, Iran
Dr Manfred Boehm, Center for Molecular Research NHLBI-NIH, Bethesda, USA
Prof Maurice Van Steensel, Sch of Life Sciences, Univ of Dundee, Scotland
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 13th August 2016. Originally added 23rd July 2010.

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.

Last updated 12th July 2016. Originally added 23rd July 2010.
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Useful Organisations

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

The mission of the Steffens Scleroderma Foundation is to support and promote research toward treatment and cure of Scleroderma, Degos Disease, and other related disorders; to promote awareness and understanding of these disorders, especially among health-care professionals; and to encourage collaborative efforts, nationally and internationally, aimed at realizing these goals.

Delivering Programs and Content That Drive Action. The PEP is a full-service, patient-centric communications agency that holds co-created dynamic content.

Skin Conditions Campaign Scotland works to improve the treatment and care for those living with skin conditions in Scotland. We are an umbrella organisation and work to ensure as many skin conditions are represented by our membership as possible. We are delighted that The Degos Disease Support Network have joined our membership to represent those with this rare condition.

Our subscribers include big pharma such as Shire, Alexion, Roche, Novartis, Pfizer etc.; SMEs,medical charities, investors, both individuals and corporations such as GE Capital, researchers, medical professionals, patient registry organisations such as CoRDS, Swiss Blood Stem Cells etc., advocates, consultants and patient group organisations. Our subscribers are across the world.

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

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.

Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them. We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support.

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

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