Sanfilippo Syndrome Resources

If you or someone you know has Sanfilippo Syndrome (MPS III) it is helpful to get as much information as possible about the disorder. Talk with your doctor about other sources of information, including other healthcare professionals who can help you learn more about Sanfilippo Syndrome (MPS III) and how it may impact you and your family. You can also contact the following organizations and foundations for more information about Sanfilippo Syndrome (MPS III).

BraveCommunity.com is intended for residents of the United States. Because rare diseases impact a small number of patients, the community of support and education often spans the collective efforts and experiences of patients, families, medical professionals, and researchers across the world. The following links may provide education about rare diseases that may be helpful to you. These 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 different from those in the U.S. You should discuss any information you receive on the internet about medical care with your doctor before making medical decisions.

U.S. Resources

Angel’s Hands Foundation
11152 South Sunup Way
South Jordan, UT 84095
Phone: 801-280-1801
info@angelshands.org
www.angelshands.org
Ben's Friends
www.bensfriends.org
Children's Rare Disease Network
24701 La Plaza
Suite 201
Dana Point, CA 92629
Phone: 949-305-8656
info@rareproject.org
www.crdnetwork.org
Genetic Alliance
4301 Connecticut Ave NW
Suite 404
Washington, DC 20008-2369
Phone: 202-966-5557
www.geneticalliance.org
National Institute of Neurological Disorders and Stroke
National Institutes of Health (NIH) Neurological Institute
PO Box 5801
Bethesda, MD 20824
Phone: 800-352-9424
www.ninds.nih.gov
National Organization for Rare Disorders (NORD)
55 Kenosia Ave
PO Box 1968
Danbury, CT 06813-1968
Phone: 203-744-0100
Toll free: 800-999-6673 (voice mail only)
www.rarediseases.org
Patients Like Me
www.patientslikeme.com
Rare Project
www.rareproject.org
The National MPS Society
Phone: 877-MPS-1001
www.mpssociety.org

International Resources

Canadian Organization for Rare Disorders (CORD)
www.cord.ca
Children Living with Inherited Metabolic Diseases (CLIMB)
CLIMB Building
176 Nantwich Road, CW2 6BG
United Kingdom
www.climb.org.uk
EURODIS - Rare Diseases Europe
www.eurodis.org
Society for Mucopolysaccharide Diseases
www.mpssociety.co.uk

Publications

Here is a short bibliography of a few examples of published articles about Sanfilippo Syndrome (MPS III) to read or to share with your doctor. You can use the Searching Medical Literature tutorial to learn how to search for the latest articles in medical journals, and be sure to ask your doctor for any new publications. This list is not a complete list of available published information about these topics.

  • Fraser J, Gason AA, Wraith JE, Delatycki MB. Sleep disturbance in Sanfilippo syndrome: a parental questionnaire study. Arch Dis Child. 2005;90(12):1239-1242. [PubMed ID 16301549]
  • Kara S, Sherr EH, Barkovich AJ. Dilated perivascular spaces: an informative radiologic finding in Sanfilippo syndrome type A. Pediatr Neurol. 2008;38(5):363-366. [PubMed ID 18410855]
  • Meyer A, Kossow K, Gal A, et al. Scoring evaluation of the natural course of mucopolysaccharidosis type IIIA (Sanfilippo syndrome type A). Pediatrics. 2007;120(5):e1255-e1261. [PubMed ID 17938166]