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Networks - Organisations For (Very) Rare
Chromosome Disorders
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Unique! A very good
British-based rare chromosome disorder support group. Most of the members are from the
UK (54 %), so Unique is growing fast to other countries. Unique has a Newsletter, where parents are
searching for other parents and a constantly updated database on the
Internet.
- For families in Denmark:
Unique
Danmark!
- For families in the Netherlands:
Zeldzaam
- Leona is a
very active German
organization for parents from children with chromosome disorders. (Leona- Verein für
Eltern chromosomal geschädigter Kinder e.V.). Good overview of disorders
and constantly new links.
- For families in France: Valentin
A.P.A.C, Valentin Association de Porteurs d'Anomalies Chromosomiques.
- For families in Poland:
GEN.
- The
Swedish national
network for rare chromosome disorders, NOC.
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Chromosome
Deletion Outreach, an international support group for families with chromosome
deletions, additions, inversions, translocations and rings. Based in USA.
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ECARUCA, a
database which collects and provides cytogenetic and clinical
information on rare chromosomal disorders.
ECARUCA aims to be a database that is easily accessible for
all participants and encourages information exchange as well as exchange of
technical knowledge.
- The Human Genome Project,
information about the international chromosome research.
Networks - Organisations For (Very) Rare
Diseases
- Eurordis is a very important
European organization for rare disorders.
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Orphanet, database
dedicated to information on rare diseases and orphan drugs.
- For families in Norway:
Frambu
- For families in Belgium:
Rare
Disorders Belgium.
- An overview of
Zelfhulpgroepen
in Belgium (groups for self help).
- Rare Diseases Hungary, Hungarian Federation of People with Rare and
Congenital Diseases
- Based in France but international is the
networkchain.
At this website contacts for rare diseases are collected.
- The International
Alliance of Patients' Organisations has an interesting site ánd a database of
patients-organisations.
- Contact a Family,
especially for families in the United Kingdom, a national charity providing support and
advice to parents whatever the medical condition of their child.
- The
Karolinska Institute, Stockholm has a long list of useful contacts on the
Internet, for
just almost all known genetic diseases.The National Board
of Health and Welfare in Sweden has information about many rare diseases including
chromosome disorders (in Swedish only).
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Family Village,
where you will find many links to other chromosome homepages, mainly American.
- The
Kinderherzzentrum in
Austria has information in English and German about the hospital and its
activities. Interesting is the explanation about Heart problems.
- The Genetics Education Center
of the University of Kansas Medical Center. Very good informed and updated! Lots of links.
- National
Organization for Rare Disorders (NORD) has information about many rare diseases
including chromosome disorders. Also links to support groups or networks involved, mainly
in the USA.
- Online
Mendelian Inheritance in Man, OMIM will search for you all kind of diseases, also
chromosome disorders.
- Pubmed,
a database of articles in international medical magazines.
- A glossery of Genetic terms can be found at the National
Human Genome Research Institute.
- IBIS,
International Birth Defects Information
System - information about birth defects and genetic disorders
in several languages!
- The International
Alliance of Patients' Organizations has an interesting site ánd a database of
patients-organisations.
- Based in France but international is the Networkchain.
At this website contacts for rare diseases are collected.
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Family village,
where you will find many links to other chromosome homepages, mainly American.
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