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Links
We hope you are able to find valuable information using the links below.
Disclaimer
The National MPS Society offers these suggested sites for additional information regarding MPS disorders. However, inclusion in this list does not constitute any real or implied endorsement of their content by The National MPS Society.
MPS International
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Organization Name |
Contact |
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Australia |
Mucopolysaccharide & Related Diseases Society Australia Ltd. |
PO Box 623 Hornsby, NSW 2077 |
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Austria |
Gesellschaft Fur Mukopolysaccharidosen und Ahnliche Erkrankungen |
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
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Canada |
Canadian Society for Mucopolysaccharide and Related Diseases Inc. |
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United Kingdom |
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Germany |
Gesellschaft fur Mukopolysaccharidosen e. V.: |
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Hong Kong |
Hong Kong Mucopolysaccharide & Rare Genetic Diseases Mutual Aid Group |
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Hungary |
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Italy |
Associazione Italiana Mucopolisaccaridosi e Malattie Affini (ONLUS) or Italian MPS Society (Charity) |
Via Savona, 13 - 20144 Milano - Italy |
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Japan |
Japanese Society of the Patients and Families with Mucopolysaccharidosis |
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Brazil |
Brazil Mucopolissacaridoses e outras doen?as gen?ticas assemelhadas |
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Croatia |
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Czech Republic |
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Korea |
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Poland |
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Sweden |
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Spain |
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Lysosomal Disease
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Country |
Organization Name |
Contact |
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Australia |
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France |
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New Zealand |
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Romania |
Fundatia Romana Pentru Boli Lisosomale |
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United States |
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United States |
Informational
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A listing of laboratories in the US that provide diagnostic testing of MPS diseases through enzyme or fibroblast analysis. |
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A listing of genetic centers in the US that provide diagnostic, treatment, and genetic counseling services. |
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A video educational program focusing on patients living with the diagnosis of MPS I; illustrating the problems the families experience, how families cope with MPS I, and how the healthcare system has attended to their medical needs. 1 AMA PRA Category 1 Credit™ is available to physicians. |
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Genetics Home Reference: Your Guide to Understanding Genetic Conditions. Includes basic information about genetics in clear language and links to online resources. |
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an organization formed to find a cure for Sanfilippo Syndrome. |
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a Message Board for families of children with special needs and, particularly, those affected by MPS. |
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an understandable guide to the complex cellular processes involved in Lysosomal Storage Diseases |
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The Carol Ann Foundation & International Morquio Organization |
a mutual aid network for people who have Morquio type A |
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follow this link to their Search Engine to query the current medical knowledge on each of the MPS diseases. |
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your guide to reliable health information |
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an international coalition of consumer and health professional organizations that supports individuals with genetic conditions and their families, educates the public and advocates for consumer-informed public policies |
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information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups |
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unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service |
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a service of the National Library of Medicine, provides access to over 11 million MEDLINE citations back to the mid-1960's and additional life science journals. PubMed includes links to many sites providing full text articles and other related resources |
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BioMarin develops enzyme therapies for serious, life-threatening diseases and conditions. They are committed to improving the lives of patients by developing novel enzyme therapies for currently unmet medical needs. |
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Genzyme Corporation is a biotechnology company that develops and markets innovative products and services for unmet medical needs. |
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GOLD is an international collaboration dedicated to improving the lives of everyone with a lysosomal disease. The website has information about LSDs and discussion forums. |
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Shire (formerly Transkaryotic Therapies) http://www.shire.com/shire/Shire is a rapidly growing global specialty pharmaceutical company. We have a global sales and marketing infrastructure with a broad portfolio of products and our own direct marketing capability in the US, Canada, UK, Republic of Ireland, France, Germany, Italy and Spain. |
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Little People of America, Inc., is a nonprofit organization that provides support and information to people of short stature and their families. |
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Dr. Mike Brown's Education Website is intended to provide parents, educators, psychologists, and other service personnel information about the mucopolysaccharide disorders. |
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The Ryan Foundation is a 501(c)(3) non-profit, all-volunteer organization dedicated to supporting research for, and the families of, those suffering from Mucopolysaccharidosis, or MPS. |
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MPSIdisease.com was created to provide information regarding MPS I to patients, families, caregivers, and health care professionals. Here you will find information about the disease, support programs and online resources to manage the challenges associated with MPS I. |
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Interactive multi-media programs feature information on IVs, blood tests, medical imaging, spinal taps. |
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GeneReviews (formerly known as GeneClinics) entry on Mucopolysaccharidosis Type 1 |
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The links and information on this website are provided by Genzyme Corporation and Biomarin Pharmaceuticals as a resource for information on the approval of Aldurazyme(superscript: ?) for the treatment of individuals with MPS I. Product information published here applies only to health care professionals and patients in the United States. At this time, Aldurazyme is not approved in other countries. |
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Learn more about lysosomal storage disorders and the science behind the diseases. Healthcare providers can get detailed clinical information on lysosomal storage disorders, including incidence, pathogenesis, diagnosis, treatment options, and more |
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Resource center for the MPS II community to access information about the genetics, diagnosis and management of MPS II as well as information about the drug development process |
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The Hunter disease eClinic is a virtual training clinic, a comprehensive multimedia guide covering all areas of Hunter disease, designed to aid with diagnosis and management of patients presenting with characteristics of MPS II (Hunter disease). |
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The Lysosomal Disease Network is a research consortium of scientists, laboratories, healthcare professionals and clinics working as networked centers of excellence to improve basic knowledge and understanding of lysosomal disorders, improve diagnosis, and advance therapeutic options for individuals affected by these disorders. |
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Provides education and information about MPS VI for families, educators, and healthcare providers |
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The MPS6CESS Foundation is a 501(c)(3) non-profit, all-volunteer organization dedicated to supporting research for, and the families of, those suffering from Mucopolysaccharidosis, or MPS. |
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Hospice is a concept of caring derived from medieval times, symbolizing a place where travelers, pilgrims and the sick, wounded or dying could find rest and comfort. The contemporary hospice offers a comprehensive program of care to patients and families facing a life threatening illness. Hospice is primarily a concept of care, not a specific place of care. |
General Health
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Dr. Koop.com |
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PDR Health |
Government
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Center for Medicare and Medicaid Services |
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Social Security Online |
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United States Department of Health and Human Services |
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Links to government and healthcare sites of interest |
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National Disabilities Council |
Advocacy/ Education
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Wrightslaw |
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Special Needs for Parents (SNAP) |
Support
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Disability is Natural |
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EParent.com |
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Parent's magazine support site |
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National Association for Home Care and Hospice's |
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Long Term Care Link |
Helpful Products
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Link to purchase disposable swim diapers fromMy Pool Pal |
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Link to Duraline Medical Products to purchase reusable swim diapers |
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Link to Walgreens to purchase pre-thickened liquids and the power to thicken you own liquids. The pre-thickened liquids are not available in the store, only on-line. The powder to thicken your own liquids can be purchased directly at the store. |
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Link to chew toys. |
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Link to Adaptive Mall.com, a resource for all kinds of |
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Link to Southpaw Enterprises, another source for Chew Toys. |
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Vehicle Conversion |
Member Login
Events
| Sat Sep 18 @09:00AM - 01:00PM Heartland Friends Run for MPS |
| Sat Sep 25 @10:00AM - 01:00PM Beat It for Benny, Indiana |
| Sat Sep 25 @12:00PM - Miles for MPS, Michigan |
| Sun Sep 26 @07:30AM - BioMarin Run for MPS, California |
| Sun Sep 26 @08:30AM - 5 for fiVe, Race for a Cure, New York |
| Sat Oct 02 @07:30AM - 08:30AM 11th Annual Run for Erin, Georgia |
| Sun Oct 03 @06:30AM - 11:00AM The National MPS Society's Walk & Run LA, California |
| Sat Oct 09 @08:00AM - Mackenzie's 5K Run/Walk for MPS, Virginia |
| Sat Oct 16 @07:00AM - MPS Run for Their Lives |
| Sat Oct 16 @08:00AM - 05:00PM Post Office Cafe 19th Annual Run, New York |
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