White Papers on Fabry Disease
Chronic Disease Awareness
Picnic Health
Links to Pharmaceutical Sites
Links to Additional U.S Resources
- NHIA Home Infusion Drug List
- Eligibility.com Social Security Disability eligibility information.
- JobHero.com Career Resources for Americans with Disabilities.
- Doctor’s Guide Select Medline and enter Fabry as the search word.
- eMedicine Journal
- FDA Patient Network
- GeneReviews Register to see full information.
- GenesInLife.org
- Genetics Home Reference
- HealthCare.gov
- Hide and Seek Foundation
- Mount Sinai – International Center for Fabry Disease
- National Center for Biotechnology Information
- National Center for Biotechnology Information – Fabry Disease: Perspectives from 5 years of FOS
- NIH – NINDS – Fabry Disease
- NIH – NINDS – Lipid Storage Diseases Fact Sheet
- NIH – NINDS – Know Stroke
- NIH – GARD – Fabry Disease
- National Kidney Foundation Search on “Fabry”
- American Kidney Fund
- (NORD) National Organization for Rare Disorders
- SSDRC.com Social Security and Disability Resource Center
- Centers for Medicare & Medicaid Services
- Medicare Podiatry Services Page 2 – Fabry may be covered.
- CenterWatch CenterWatch was the first Internet site to publish detailed information about active clinical trials that could be accessed by patients and their advocates. Today, they have one of the largest clinical trial databases actively seeking patients on the Internet.
- Clinical Trials 101
- Disability.gov Government services and disability application.
- Fabry Disease
- Fabry Podcast
Links to Additional Fabry Sites & Resources
- Brazilian Association of Fabry Disease
- Canadian Fabry Association
- Canadian Organization for Rare Disorders (CORD)
- Belgium – BOKS
- Denmark – Fabry Patientforening
- England – MPS Society
- Fabry International Network – International
- Fabry Support Group Australia
- Fabry Support & Informatie Groep Nederland
- Finland – MS liitto
- France – APMF
- France – VML – Lysosomal Storage Disorders
- Hungary – Fabry Disease
- Hungary – Foundation for Patients with Fabry Disease (HUFPFD)
- Italy – GIPF
- Italy – Aipaf
- Japan Fabry Disease Patients and Family Association
- LDA – Lysosomal Diseases Australia
- Morbus Fabry – Germany
- National Fabry Disease Foundation
- Norway – Pasientforening
- Poland – Stowarzyszenie Rodzin z Chorobą Fabry’ego
- Slovak Republic – Association of Rare Genetic Diseases
- Spain – ADAC Association
- Spain – MPS Association
- Swiss – Fabrysuisse
- Genetic Alliance
- Global Organization for Lysosomal Diseases (GOLD)
Links to Care and Treatment Facilities
- Baylor Research Institute – Institute of Metabolic Disease
- Diplomat Pharmacy
- Emory University School of Medicine – Lysosomal Storage Disease Center
- Infusion Associates N.E. – Grand Rapids, MI
- Mount Sinai – International Center for Fabry Disease
- Orsini Healthcare
- UConn Health Center
- UCLA Fabry Disease Program
- UCSF-Stanford Lysosomal Disease Center
