Family Village Coffee Shop
National Parent-to-Parent Programs
United States: All Diagnoses
- Birth Defect Research for Children
800 Celebration Avenue, Suite 225
Celebration, FL 34747
Phone: 407-566-8304
Fax: 407-566-8341
E-mail: staff@birthdefects.org
Website: http://www.birthdefects.org
This association maintains the National Birth Defect Registry which is used to match
families of children who have the same or similar birth defects.
- Mothers United for Moral Support (MUMS)
c/o Julie Gordon
150 Custer Court
Green Bay, Wisconsin USA 54301-1243
(920) 336-5333
Fax: (920) 339-0995
Website: http://www.netnet.net/mums/
This organization has a database of over 14,000 families from 45 countries covering over 2500 rare disorders. Families whose children have the same or similar
disorder can find support and information by exchanging valuable information
about their children.
- Search and Respond
c/o Exceptional Parent Magazine & The Family Education Network
209 Harvard Street, Suite 303
Brookline, Massachusetts USA 02215
(617) 730-5800
Fax: (617) 730-8742
Website: http://www.eparent.com/phpbb2/index.php
This organization focus on all disabilities.
United States: Neurometabolic Disorders
- Association for Neurometabolic Disorders
c/o Cheryl Volk
5223 Brookfield Lane
Sylvania, Ohio USA
(419) 885-1497
This association matches neurometabolic disorders such as Galactosemia, Maple Syrup
Urine Disease, PKU and others.
United States: Growth Disorders
- MAGIC Foundation for Children's Growth
6645 W. North Ave.
Oak Park, Illinois, USA, 60302
(708) 383-0808
(800) 3 MAGIC 3
Fax: (708) 383-0899
E-mail: mary@magicfoundation.org
Website: http://www.magicfoundation.org/
This foundation supports local groups and provides parent-to-parent matching through networking forms that connect families with the same disorder.
United States: Chromosome Disorders
- Chromosome Deletion Outreach (CDO)
P.O. Box 724
Boca Raton, FL 33429-0724 USA
(561) 395-4252 Family Helpline
Website: http://www.chromodisorder.org/
This organization focuses on chromosome deletions, inversions, and additions.
Australia: All Diagnoses
- Association of Genetic Support of Australia (AGSA)
66 Albion Street
Surry Hills
New South Wales, Australia, 2010
Telephone: +61 2 9211 1462
Fax: +61 2 9211 8077
Reg Charity No. CFN: 15481 ABN: 83 594 113 193
E-mail: agsa@ozemail.com.au
http://www.agsa-geneticsupport.org.au/
AGSA will endeavor to facilitate contact with another family/individual affected by the same, or similar conditions, and/or provide information about an overseas support group. AGSA also provides: A Peer Support and Information Officer who deals with enquiries and facilitates ongoing support for individuals, families, health professionals and other interested groups.
Great Britain: All Diagnoses
Great Britain: Chromosome Disorders
- Unique - Rare Chromosome Disorder Group
P.O.Box 2189
Caterham
Surrey
CR3 5GN
England
Telephone or Fax: (44) (0)1883 330766
Web: http://www.rarechromo.org/
This organization focuses on rare chromosomal disorders.
Great Britain: Metabolic Diseases
New Zealand: All Diagnoses
- Parent-to-Parent New Zealand, Inc.
P.O. Box 234
Waikato Mail Centre
Vialou House, 6 Vialou Street
Hamilton
Ph: 07-8341108 or 07-8341153
Fax: 07-8341108
TOLL-FREE: 0508 236 236
Email p2pnational@compuserve.com
Website: http://www.parent2parent.org.nz/
This organization focuses on all disabilities.
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