Organizations | Healthcare Providers
BraveCommunity is pleased to offer a number of resources for you to find additional information about the genetics
community and rare genetic disorders. BraveCommunity.com is intended for residents of the United States. The following
sites may be subject to policies, regulations or laws that are different from those in the United States. Shire HGT is not
responsible for the content on these sites except for those sites operated by Shire HGT. They may have different policies
(including privacy policies) than BraveCommunity.com and may contain information that reflect local standards, including
medical standards of care, that are different from those in the U.S.
Genetic Organizations:
- American Board of Medical Genetics (ABMG)
- www.abmg.org
- American Board of Genetic Counselors (ABGC)
- www.abgc.net
- American College of Medical Genetics (ACMG)
- www.acmg.net
- American Society of Human Genetics (ASHG)
- www.ashg.org
- Association of Professors of Human and Medical Genetics (APHMG)
- www.genetics.faseb.org/genetics/aphmg/aphmg1.htm
- Genetics Society of America (GSA)
- www.genetics-gsa.org
- National Coalition for Health Professional Education in Genetics (NCHPEG)
- www.nchpeg.org
- National Society of Genetic Counselors
- www.nsgc.org
- Society for Inherited Metabolic Disorders
- www.simd.org
Genetic Resources:
- Angel's Hands Foundation
- www.angelshands.org
- Children's Rare Disease Network
- www.crdnetwork.org
- GeneTests
- www.genetests.org
- www.ncbi.nlm.nih.gov/sites/GeneTests/?db=GeneTests
- Genetic Alliance
- www.geneticalliance.org
- The Human Genome Organization
- www.hugo-international.org
- Lysosomal Disease Network
- www.lysosomaldiseasenetwork.org
- National Institute of Neurological Disorders and Stroke National Institutes of Health (NIH) Neurological Institute
- www.ninds.nih.gov
- National Organization for Rare Disorders (NORD)
- www.rarediseases.org
Allergy Organizations:
- American Academy of Allergy, Asthma, & Immunology
- www.aaaai.org
- American College of Allergy, Asthma, Immunology
- www.acaai.org
- National Institute of Allergy and Infectious Diseases
- www.niaid.nih.gov
Disease Specific Sites
- The Evanosky Foundation
- www.evanoskyfoundation.org
- Fabry Support & Information Group (FSIG)
- www.fabry.org
- GaucherPatients.com (provided by Shire)
- www.gaucherpatients.com
- Hereditary Angioedema Asociation
- www.haea.org
- HunterPatients.com (provided by Shire)
- www.hunterpatients.com
- Immune Deficiency Foundation
- www.primaryimmune.org
- MLD Foundation
- www.mldfoundation.org
- The Myelin Project
- www.myelin.org
- National Gaucher Foundation
- www.gaucherdisease.org
- The National MPS Society
- www.mpssociety.org
- United Leukodystrophy Foundation
- www.ulf.org
International Resources
- Australian Leukodystrophy Support Group Inc.
- www.alds.org.au
- The Canadian MPS Society
- www.mpssociety.ca
- Canadian Organization for Rare Disorders (CORD)
- www.cord.ca
- Children Living with Inherited Metabolic Diseases (CLIMB)
- www.climb.org.uk
- ELA - European Leukodystrophy Association
- www.ela-asso.com
- EURODIS – Rare Diseases Europe
- www.eurordis.org
- Fabry Association
- www.fabrycanada.com
- Fabry Society of Canada
- www.fabrysociety.org
- Focus on Fabry (provided by Shire)
- www.focusonfabry.com
- Gauchers Association (UK)*
- www.gaucher.org.uk
- *This Web site includes a complete list of global patient organizations and their Web sites.
- Global Organisation for Lysosomal Diseases (GOLD)
- www.goldinfo.org
- Hope Foundation
- www.bethanyshope.org
- International Federation of Human Genetics Societies (IFHGS)
- www.ifhgs.org
- The Nordic Fabry Group
- www.fabry.dk
- Society for Mucopolysaccharide Diseases
- www.mpssociety.co.uk