Additional Resources
C22C Additional Resources
- UNIQUE – The Rare Chromosome and Gene Disorder Support Group: A UK based charity with an international membership; medically-verified information on wide range of rare chromosome and single gene disorders
- Chromosome Disorder Outreach: US Based organization
- Canadian Organization for Rare Disorders
- National Organization for Rare Disorders
- Support Organization for Trisomy 18, 13 and \related Disorders (SOFT)
- Genetic Alliance
- Rare Families Canada
- Contact – For Families with Disabled Children: UK based
- ARCAN: Australian Rare Chromosome Awareness Network
- Orphanet: Portal for rare diseases and drugs
- MyGene2: Portal for families with rare genetic conditions to contact other families, clinicians and researchers
- PubMed: A database of biomedical literature
- GeneReviews: Information on inherited conditions
- Genetics Home Reference: Information about the effects of genetic variation on health
- Genetic and Rare Diseases Information Centre: Information on rare and genetic diseases
- Online Mendelian Inheritance in Man: A catalogue of human genes and genetic disorders
- Think Genetic: Genetic database
- RareConnect: Online community
- RareShare: Online community
- SWAN USA: Syndromes Without a Name
- SWAN UK: Syndromes Without a Name
- SWAN Australia: Syndromes Without a Name
- Eurordis: An alliance of patient organizations in Europe representing rare disease
Pregnancy Choices, Infertility, Infant/Child Loss
- Balanced Translocation Support Group – Facebook
- Antenatal Results and Choices
- Still Standing Magazine
- Compassionate Friends – Canada
- Compassionate Friends – USA:
- SANDS: Stillbirth and Neonatal Death Support
Chromosome Specific Support and/or Information
Chromosome 1
Chromosome 2
Chromosome 3
- None specific
Chromosome 4
- 4p- Support group (Wolf- Hirschhorn syndrome)
- The Real Story about Wolf-Hirschhorn Syndrome
- Liv4thecure
Chromosome 5
Chromosome 7
Chromosome 8
Chromosome 9
Chromosome 10
Chromosome 11
- International WAGR syndrome Association
- 11q Research and Resource Group (Jacobsen syndrome)
- European Chromosome 11 Network
- Emanuel syndrome (Chromosome 22 Central)
- Potocki Shaffer syndrome (11p11.2 deletion)
Chromosome 12
Chromosome 13
- Chromosome 13q Deletion
- Support Organization for Trisomy 18, 13 and Related Disorders (SOFT)
- SOFT UK
- HOPE for Trisomy 13 and 18
Chromosome 14
Chromosome 15
- Duplication 15q Alliance
- Prader-Willi syndrome Association
- Angelman syndrome Foundation
- Foundation for Angelman syndrome Therapeutics
Chromosome 16
Chromosome 17
- Potocki-Lupski syndrome Outreach Foundation (Duplication 17p11.2)
- Deletion 17p11.2 – Parents and Researchers Interested in Smith-Magenis syndrome
- Koolen de Vries syndrome (17q21.31 deletion syndrome)
- 17q12 Foundation
Chromosome 18
- Trisomy 18 Foundation (Edwards syndrome)
- Chromosome 18 Registry and Research Society
- Support Organization for Trisomy 18, 13 and Related Disorders (SOFT)
- SOFT UK
- Trisomy 18 Foundation
- HOPE for Trisomy 13 and 18
Chromosome 19
- No specific group exists
Chromosome 20
Chromosome 21
Chromosome 22
- 22q and You Center
- The International 22q11.2 Foundation (deletions and duplications)
- Mosaic Trisomy 22
- Trisomy 22 Family Network
- Phelan-McDermid syndrome Foundation (22q13 deletion)
- Max Appeal (22q11.2 deletion)
- Cat Eye syndrome International
- Emanuel syndrome
- 22q11.2 Duplication syndrome
- 22q12 and 22q13 deletions and duplications
