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.
Lysosomal Disease
| Country | Organization Name | Contact |
| Australia | Lysosomal Diseases Australia | john.hopwood@adelaide.edu.au |
| Brazil | Lysosomal Diseases Brazil | |
| France | Association Vaincre les Maladies Rare | vml@vml-asso.org |
| New Zealand | Lysosomal Diseases New Zealand | john.forman@xtra.co.nz |
| Norway | Lysosomal Diseases Norway | info@frambu.no |
| Romania | Fundatia Romana Pentru Boli Lisosomale | teo-titi@usa.net |
| United States | International Society for Mannosidosis & Related Diseases | info@mannosidosis.org |
| United States | National Tay-Sachs & Allied Diseases Association | info@ntsad.org |
Informational
| MPS Diagnostic Laboratories | A listing of laboratories in the US that provide diagnostic testing of MPS diseases through enzyme orfibroblast analysis. |
| MPS Genetic Centers | A listing of genetic centers in the US that provide diagnostic, treatment, and genetic counseling services. |
| MPS I Program | 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. 1AMA PRA Category 1 Credit is available to physicians. |
| Genetics Home Reference | Genetics Home Reference: Your Guide to Understanding Genetic Conditions. Includes basic information about genetics in clear language and links to online resources. |
| The Children’s Medical Research Foundation, Inc.: | an organization formed to find a cure for Sanfilippo Syndrome. |
| MPS Forum Dot Com | a Message Board for families of children with special needs and, particularly, those affected by MPS |
| Human Genome Project Information | an understandable guide to the complex cellular processes involved in Lysosomal Storage Diseases |
| The Carol Ann Foundation & International Morquio Organization | a mutual aid network for people who have Morquio type A |
| Online Mendelian Inheritance In Man | follow this link to their Search Engine to query the current medical knowledge on each of the MPS diseases. |
| HealthFinder: | your guide to reliable health information |
| Genetic Alliance: | 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 |
| Office of Rare Diseases: | information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups |
| N.O.R.D (National Organization for Rare Diseases): | 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 |
| PubMed: | 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 |
| BioMarin Pharmaceuticals: | 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. |
| Genzyme: | Genzyme Corporation is a biotechnology company that develops and markets innovative products and services for unmet medical needs. |
| International Society for Mannosidosis and Related Diseases (ISMRD) | ISMRD is an internationally focused nonprofit organization whose mission is to advocate for families and patients affected by one of the Glycoprotein Storage Diseases. |
| Shire Pharmaceutical | 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. |
| Little People of America: | Little People of America, Inc., is a nonprofit organization that provides support and information to people of short stature and their families. |
| Dr. Mike Brown’s Education Website: | Dr. Mike Brown’s Education Website is intended to provide parents, educators, psychologists, and other service personnel information about the mucopolysaccharide disorders. |
| The Ryan Foundation: | 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. |
| MPSIDisease.com | 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. |
| Starbright.org | Interactive multi-media programs feature information on IVs, blood tests, medical imaging, spinal taps. |
| GeneClinics.com | GeneReviews (formerly known as GeneClinics) entry on Mucopolysaccharidosis Type 1 |
| Aldurazyme.com | 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. |
| Hunterpatients.com | 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 |
| Lysosomal Disease Network | 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. |
| MPSVI.com | Provides education and information about MPS VI for families, educators, and healthcare providers |
| MPS6CESS Foundation | 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. |
| Hospice | 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. |
| Brave Community |
Website created by Shire HGT to provide news, insights and resources for certain rare diseases. |
| Johns Hopkins LSD Center | Johns Hopkins LSD Program is committed to offering comprehensive and personal clinical care for patients with LS diseases. They are researching small molecules to treat LSDs and regularly collect patient samples to better understand the natural history of these diseases. |
| Transitions: Managing Your Own Healthcare – What Every Teen with an LSD Needs to Know |
This book is intended to help families successfully manage the transition from childhood to adulthood in terms of learning how to take over your own healthcare management and living with a lysosomal storage disease. Please share it with any MPS teens, preteens, and parents! |
| Jonah’s Just Begun | Raises funds and then distributes them to academic researchers focused on Sanfilippo Type C. We have two goals: first, to drive the science that will ultimately lead to a cure for Sanfilippo Type C; and second, to raise awareness for all rare diseases. We also empower and encourage others affected by rare diseases to advocate for cures. |
General Health
| Dr. Koop.com | www.drkoop.com |
| PDR Health | www.gettingwell.com |
Government
| Center for Medicare and Medicaid Services | http://www.cms.gov/ |
| Social Security Online | http://www.ssa.gov/ |
| United States Department of Health and Human Services | http://www.hhs.gov/ |
| National Disabilities Council | http://www.ncd.gov |
Advocacy/ Education
| Wrightslaw | http://www.wrightslaw.com/ |
Support
| Disability is Natural | http://www.disabilityisnatural.com/ |
| EParent.com | www.eparent.com |
| Parents magazine support site | http://community.parents.com/home |
| National Association for Home Care and Hospices | http://www.nahc.org/ |
| National Care Planning Council | http://www.longtermcarelink.net/ |
Helpful Products
| Link to purchase disposable swim diapers fromMy Pool Pal | http://www.mypoolpal.com |
| Link to Duraline Medical Products for specialty undergarments | http://www.dmponline.com/catalog/ |
| 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. | http://www.walgreens.com |
| Link to chew toys. | http://www.arktherapeutic.com/Chew.html |
| Link to Adaptive Mall.com, a resource for all kinds of medical equipment |
http://adaptivemall.com/ |
| Link to Southpaw Enterprises, another source for Chew Toys. | http://southpawenterprises.com/OralMotor/OralMotor.asp |
| Vehicle Conversion | http://www.blvd.com/Accessible_Vehicles/ |