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Welcome to the Degos Patients’ Support Network website!
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, Director of the Departments of Dermatology and Immunology, Dessau Medical Centre, Germany.
There is information and space for patients, their carers and relatives, their doctors and researchers.
The Degos Patients' 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.
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.
We will always listen.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.
Margaret Mead
This site is funded by the private investment of Judith and Alan Calder, from donations, and from a small amount of advertising revenue, and is run with no subscriptions or fees.
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 Patients’ 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 Patients’ 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.
Page last modified on 22 April, 2009
