Index for patients and family

This part of the HIDS.net website is particularly meant for patients and their family and friends, to get more information about hyper-IgD syndrome. (Don’t forget to read our disclaimer)

What is HIDS?

A brief explanation of this disease, with its symptoms, treatment options, what we know and what we don’t know about it can be found on this site. See:

Newspaper articles on HIDS

Translations in English of two Dutch newspaper articles. They appeared in 1999, shortly after the discovery of the causative gene defect. However, they still give a good impression of the disease and its impact for patients.

Links to other sites

Printo – Information on paediatric rheumatic diseases, including the hereditary autoinflammatory disorders, in several different languages.

Orphanet – A database dedicated to information on rare diseases and orphan drugs, with also a section for patients.

NOMID home page – Website on NOMID/CINCA (a related autoinflammatory disorder) by patients, families and friends, for patients, families and friends.

FMFcommunity.org – Website on FMF and related periodic fever syndromes for patients, families and friends.

Joost Frenkel (email) – Joost Frenkel is a pediatrician in Utrecht, the Netherlands, with a special interest in HIDS and other autoinflammatory syndromes, who will be happy to help with any questions from (parents with) children with HIDS.

HIDS patients platform

Due to its incapacitating attacks that occur very frequently, HIDS has a great impact on social, working and cultural life. The recurrent periods of illness profoundly affect family life. In most families, life is centered around the patient with HIDS which may have subsequent disadvantageous consequences. Patients with a chronic illness such as HIDS need support, acknowledgement and information. At present, there is unfortunately no specific HIDS patient organization that we are aware of. See the links above for some organizations that may be of interest.

Last update: March 12, 2011

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