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MISCELLANEOUS
9pMinus/Alfi’s Syndrome: Chromosome 9pMinus Network
Website with resources for individuals with Monosomy 9p.
www.9pminus.org
11Q Research and Resource Group
Support, research and yearly conference to support those with any abnormalities of the 11th chromosome.
www.11qusa.org
American Cleft Palate-Craniofacial Association (ACPA)
Resources for those with cleft lip and palate including Cleftline Bears (teddies with cleft stitches), educational materials, grants and scholarships.
800-242-5338
www.cleftline.org
Angelman Syndrome Foundation
Resources, research and info for those living with AS.
800-432-6435
www.angelman.org
The Association for X and Y Chromosome Variations (AXYS)
Dedicated to providing information, connection and support to individuals with one or more extra X or Y chromosomes.
888-999-9428
www.genetic.org
Bohring-Opitz Syndrome/ASXL1
Dedicated to mapping those diagnosed with ASXL1 for research, resources, supports and developing best practices.
www.bohring-opitz.org
Bridge the Gap SYNGAP Education and Research Foundation
Parent run organization raising awareness and searching out treatments for single gene mutations like Fragile X, Angelman, Rett and Phlean-McDermid Syndromes associated with SYNGAP1.
www.bridgesyngap.org
Burn Institute San Diego
8825 Aero Dr. #200
SD, 92123
858-541-2277
www.burninstitute.org
California Chronic Care Coalition (CCCC)
Resources and information on prevention and healthcare reform for those with chronic conditions and diseases.
916-444-1985
www.chroniccareca.org
Christie’s Place
HIV/AIDS support center provides comprehensive education, support and advocacy to women, children and families impacted by HIV/AIDS.
2440 Third Ave.
SD, 92101
619-702-4186
www.christiesplace.org
Chromosome 18 Registry and Research Society
Dedicated to research and information for all anomalies of Chromosome 18.
www.chromosome18.org
Chromosome Disorder Outreach
Raises awareness and provides resources for those with rare chromosome disorders.
561-395-4252
www.chromosomedisorder.org
Complex Child
Monthly online source of information written by parents of medically complex children with special healthcare needs and disabilities.
www.complexchild.org
Distal Trisomy 10q Families
Registry of individuals with Trisomy10q that helps provide data, support and resources.
www.trisomy10q.org
Duplication Cares
Support and information for those affected by 7q11.23 Duplication.
440-853-7023
www.duplicationcares.org
DYRK1A Syndrome
Research and information regarding disrupted chromosome 21Q22.13.
www.dyrk1a.org
Five P Minus Society
Provides valuable information, education and support for families, educators, and medical professionals about 5P Minus or Cris Du Chat Syndrome.
www.fivepminus.org
GeneCards
Integrative database that provides comprehensive, user-friendly information on all annotated and predicted human genes.
www.genecards.org
Genetics Home Reference (NIH)
Parent-friendly, printable introduction to fundamental topics related to human genetics, including illustrations and basic explanations of genes, testing, therapy and research.
https://ghr.nlm.nih.gov/primer
Global Genes
The leading rare and genetic disease patient advocacy nonprofit organization. Centered on increasing rare disease awareness, public and physician education, and supporting research initiatives to find treatments and cures.
Aliso Viejo, CA
949-248-RARE (7273)
www.globalgenes.org
Helping Hands for GAND
Supports individuals and families affected by GATAD2B-associated neurodevelopmental disorder (GAND), to increase awareness, and to work toward research and treatment.
www.gatad2b.org
HypoPARAthyroidism Association
Nonprofit patient organization working to improve lives touched by hypoparathyroidism through research, resources and education.
www.hypopara.org
International Bipolar Foundation
Advances research toward the elimination of Bipolar Disorder, provides and enhances care, resources and support services and works to erase the stigma associated with mental illness through education.
8895 Town Centre Dr. #105-360
SD, 92122
858-764-2496
www.ibpf.org
International Foundation for CDKL5 Research
Information, research and support on CDKL5.
www.cdkl5.com
International FOXG1 Foundation
Information and research for those with FOXG1.
www.foxg1.org
International Rett Syndrome Foundation
Funds research for treatments and a cure for Rett Syndrome while enhancing the overall quality of life for those living with it by providing information, programs and services.
800-818-7388
www.rettsyndrome.org
International Trisomy 13/18 Alliance
Information and support groups for those with Trisomy 13 or Trisomy 18.
www.internationaltrisomyalliance
.com
Jeffrey Modell Foundation for Primary Immunodefficiency
Nonprofit patient organization providing a physician finder, resources, research and advocacy for people with immune issues.
www.info4pi.org
KAT6A Foundation
Family group that registers families, supports research and disseminates information related to KAT6A.
www.chloekat6a.org
KBG Foundation
Research, information and supports for children living with KBG and their families.
www.kbgfoundation.com
MalaCards
Integrated database of human maladies and their annotations.
www.malacards.org
Mended Little Hearts
Education, advocacy, support for families with children with heart disease.
888-432-7899
www.mendedhearts.org
Mowat-Wilson Syndrome Foundation
Patient registry, research, grants and family support for those with Mowat-Wilson Syndrome.
www.mowat-wilson.org
Muscular Dystrophy Association
National organization dedicated to research and cure with resources for care, support and recreation.
800-572-1717
www.mda.org
National Organization for Rare Disorders (NORD)
Federation of voluntary health organizations dedicated to helping people with rare diseases and assisting the organizations that serve them. Committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service.
800-999-6673
www.rarediseases.org
Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS)
Research, information and family supports for kids with Smith-Magenis Syndrome.
www.prisms.org
Phelan-McDermid Syndrome (PMS) Foundation
Information, patient registry and support for people living with 22q13 Deletion Syndrome (PMS).
www.pmsf.org
Pitt Hopkins Research Foundation
Resources, research and support for people with Pitt-Hopkins.
www.pitthopkins.org
Potocki-Shaffer Syndrome
Information and support for those living with 11P 11.2 Deletion
www.potockishaffersyndrome
.org
Prader-Willi Syndrome Association (PWSA) USA
Family support and medical resources for those with Prader-Willi Syndrome.
800-926-4797
www.pwsausa.org
Pura Syndrome Global Research Network
Information and support for children with a genetic anomaly of 5Q 31.3
www.purasyndrome.org
Public Health Grand Rounds (CDC)
Monthly series created to foster discussion and debate and increase awareness and advocacy on major public health issues.
800-232-4636
www.cdc.gov/cdcgrandrounds/index.htm
Rare and Undiagnosed Network
A group of advocates, families, and healthcare providers who work to empower rare and undiagnosed patients with genomic information and community through advocacy, networking and support.
www.rareundiagnosed.org
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
Information, research and coping strategies for those with RSDSA/ CRPS.
877-662-7737
www.rsds.org
SATB2gene.com
Medical information and resources for people with SATB2 (Glass Syndrome).
www.satb2gene.com
Simons VIP Connect
Online community that supports families with rare genetic variants associated with Autism and developmental delay. Provides access to resources, information and family support.
www.simonsvipconnect.org
Sjögren’s Syndrome Foundation
Information on diagnosis, treatment, support and clinical research on Sjogren’s Syndrome
www.sjogrens.org
SOFT
Information and support for people with Trisomy 18 or 13.
www.trisomy.org
STXBP1 Disorders
Parent organization that provides funds for research and supports scientists and medical professionals dedicated to ending STXBP1 Epileptic Encephalopathy.
www.stxdisorders.org
Stickler Involved People (SIP)
Support group and resource page for those with Stickler Syndrome.
(Stickler’s Syndrome)
316-259-5194
www.stickler.org
Tracking Rare Incidence Syndromes (TRIS) Project
Seeks to increase the knowledge base on rare incidence trisomy conditions, and to make this information available to families and medical professionals.
www.tris.siu.edu
Turner Syndrome Society
Provides resources, support and clinical care guidelines for those with Turner Syndrome.
800-365-9944
www.turnersyndrome.org
Unique
The rare chromosome disorder support group.
www.rarechromo.org
