Valuable References

PLEASE FIND A FEW LINKS BELOW WITH VALUABLE INFORMATION...


Pompe patient organizations
Acid Maltase Deficiency Association (AMDA)
www.amda-pompe.org

International Pompe Association (IPA)
www.worldpompe.org

Association for Glycogen Storage Disease (AGSD)
www.agsdus.org

United Pompe Foundation (UPF)
www.unitedpompe.com




Rare Disease Support
Running for Rare Diseases
http://runningforrarediseases.org


Advocacy and support services
Genetic Alliance
www.geneticalliance.org

Muscular Dystrophy Association (MDA)
www.mdausa.org
www.quest.mda.org

National Organization for Rare Disorders, Inc. (NORD)
www.rarediseases.org

National Society of Genetic Counselors (NSGC)
www.nsgc.org


Children’s advocacy
National Dissemination Center for Children with Disabilities (NICHCY)
www.nichcy.org

Parent to Parent (P2P) USA
www.p2pusa.org

Family Voices
www.familyvoices.org


Caregiver support
National Family Caregivers Association (NFCA)
www.nfcacares.org

National Caregivers Library
www.caregiverslibrary.org

Family Caregiver Alliance (FCA)
www.caregiver.org

Well Spouse Association
www.wellspouse.org

CaringBridge.org
www.caringbridge.org


Clinical trial information
www.ClinicalTrials.gov
www.ClinicalTrials.gov


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