Below is a list of patient support groups that can be a resource for patients and families with MPS I.
- Carolinas Cord Blood Bank provides information regarding Umbilical Cord Blood Transplantation.
- CLIMB (Children Living with Inherited Metabolic Diseases) provides information, advice, and support on over 550 metabolic diseases.
- Every Life Foundation
- Genetic Alliance provides information and resources regarding genetic diseases.
- Global Genes
- The MAGIC Foundation is a non-profit organization created to provide support services for the families of children afflicted with chronic and/or critical disorders, syndromes and diseases that affect a child's growth.
- The National Center for Biotechnology Information (NCBI) is a searchable website that includes information on genetic diseases.
- National Institutes of Health Genetic and Rare Disease Information Center (GARD) provides information on more than 6,000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.
- The National MPS Society serves individuals, families and friends affected by MPS and Mucolipidosis (ML) by supporting research and families and by increasing public and professional awareness.
- The National Organization of Rare Diseases (NORD) provides resources regarding rare diseases.
- National Society of Genetic Counselors, Inc. provides information on the genetic counseling profession and its guiding principles.
- The Ryan Dant Foundation
Note that the opinions expressed by the organizations above do not necessarily reflect the views of Sanofi Genzyme. Sanofi Genzyme does not maintain and is not respobsible for the content of communications for the listed organizations or their websites, with the exception of www.mps1disease.com, which is a website developed and maintained by Sanofi Genzyme.