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Home : Resources : Support Groups : Diseases and Conditions : Genetic Disorders

Listings

8th International Symposium on Mucopolysaccharide and Related Diseases
The 8th International Symposium on MPS and Related Diseases will be held in Mainz, Germany. Traditionally, this symposium unites scientists, patients and their parents to share and discuss recent scientific results.
http://www.mps-kongress2004.de
Alliance of Genetic Support Groups
National coalition of consumers, professionals, and genetic support groups to voice the common concerns of children, mature, and families living with, and at risk for, genetic conditions.
http://www.geneticalliance.org/
Chromosome Deletion Outreach, Inc. (CDO)
Non-profit voluntary support group for families affected by rare chromosome disorders.
http://www.chromodisorder.org/
Chromosome Help-Station
Information on rare chromosomal disorders. Support and advice for families.
http://www.chromosomehelpstation.com/
Cornelia de Lange Syndrome (CdLS) Foundation Outreach
Family support organization which exists to ensure the early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime.
http://www.cdlsusa.org
Distal Trisomy 10q Families
Support for families of children with Distal Trisomy 10q. Family stories, contacts, other information.
http://trisomy10q.darylanderson.com
Ideas
A support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15).
http://IDIC15.ORG
Maree-Medical Webshop, ordering incontinence products online
Maree-Medical sells all kinds of incontinence products online. Also diapers and plastic pants for bedwetting and nursing products.
http://www.maree-medical.com
S.O.F.T.
A United Kingdom support organisation for parents of infants with Trisomy 13 and 18 and other related disorders.
http://www.soft.org.uk
Trisomy 18 Angel
This site was made in memory of our daughter Abigail Renee, to help other families who have been given a diagnosis of Trisomy 18.
http://www.trisomy18angel.com
Trisomy 18 Support Online Community
Participate in this support group for those pregnant with, parenting, or grieving the loss of child with Trisomy 18. Includes resources for all stages of the journey.
http://www.trisomy18support.org
Unique Rare Chromosome Disorder Support Group
Support and information for families of children with rare disorders.
http://www.rarechromo.org/
Who is EPI ?
The mission of the European Porphyria Initiative (EPI) is to present an up to date approach to the understanding of porphyria.
http://www.porphyria-europe.com
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