Chromosome 22q11.2 duplication syndrome

Organizations

Are there good support groups for 22q11.2 duplication syndrome?

There are good umbrella support organizations and/or registries that could benefit individuals with 22q11.2 duplication and their families.

UNIQUE: Rare Chromosome Disorder Support Group:

The Rare Chromosome Disorder Support Group's mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.

Contact:

P.O.Box 2189, Caterham Surrey CR3 5GN England

Telephone: 44 (0)1883 330766

URL: http://www.rarechromo.org/

Chromosome Disorder Outreach (CDO):

CDO's mission is to provide support and information to anyone diagnosed with a rare chromosome syndrome. They promote research and a positive community understanding of all chromosome disorders. CDO offers an extensive library of available up-to-date articles to members and also maintains a detailed database registry. They also publish periodic newsletters, provide access to research opportunities and interaction with our medical advisory board. CDO offer members connections with others who are coping with the same or similar chromosomal diagnosis through our personalized networking programs.

Contact:

Address: P.O. Box 724, Boca Raton, FL 33429-0724

Phone: 888.236.6880 (toll free)

Web site: http://www.chromodisorder.org/

NORD:

National Organization of Rare Disorders is a patient advocacy organization dedicated to individuals with rare diseases. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Contact:

Address: National Organization for Rare Disorders National Headquarters 55 Kenosia Avenue Danbury, CT 06810

Phone: 203-744-0100

Website: http://rarediseases.org/

Global Genes:

Global Genes is a rare disease patient advocacy organization. This non-profit organization promotes the needs of the rare disease community. Global Genes consists of over 500 global organizations.

Contact:

Address: Global Genes World Headquarters 28 Argonaut, Suite 150 Aliso Viejo, CA 92656

Phone: 949-248-RARE (7273)

Website: https://globalgenes.org/contact/

Chromosome 22 Central:

Chromosome 22 Central is a parent run support organization which supports over 2000 families worldwide who are affected by many different chromosome 22 disorders. This group offers basic information on 22q11.2 duplication syndrome.

Contact:

Address: Chromosome 22 Central c/o Murney Rinholm

7108 Partinwood Drive, Fuquay-Varina, North Carolina, 27526 USA

Phone: (919) 567-8167

Website: http://www.c22c.org/

There are also specific support groups dedicated to individuals and their families who have chromosome 22 duplications.

22q11 microduplication Facebook Group:

This is a parent run support group to meet, share experiences, ideas, and suggestions.

Contact:

Website: search "The Unknown:Chromosome 22:DUPLICATION" on Facebook to join.

22q11 Microduplication Parent Discussion Group:

This group is for parents of children diagnosed with 22q11.2 duplication syndrome. This group was started for parents to compare notes, bounce ideas off each other and, most importantly, be a support for each other. Parents, researchers and medical professionals are all welcome to contribute.

Contact:

Website: https://groups.yahoo.com/neo/groups/22qduplication/info?yguid=284564197

Feel free to ask your genetic counselor, medical geneticist, or primary doctor if they have other contacts with information about 22q11.2 duplication syndrome, or familiarity with chromosome disorders in general that can serve as a source of information and/or a peer mentor for support.

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