Links and Resources

 
 

MPS and ML Library

Our library includes details on each MPS and ML syndrome type, as well as fact sheets that cover a broad range of the MPS experience.

Links

These links offer helpful information related to the MPS experience.

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.

CountryOrganization NameContact
AustraliaMucopolysaccharide & Related Diseases Society Aust. LtdNational Office
Australian MPS Society
PO Box 131
Heidelberg
VIC 3084
info@199.48.134.250/~mps.au
Ph: 1800 045 515
AustriaGesellschaft fur MukoPolySaccharidosenoffice@mps-austria.at
Ph: 03 775 48 39
BelgiumBOKS VZWinfo@boks.be
CanadaThe Canadian Society for Mucopolysaccharide and Related Diseases Inc.#218-2055 Commercial Drive
Vancouver, BC V5N 0C7
Canada
Ph: (604) 924-5130
Ph Toll Free: 1-800-667-1846
info@199.48.134.250/~mps.au
GermanyGesellschaft fur Mukopolysaccharidosen e. V.:Geschäfts- und Beratungsstelle:
Herstallstraße 35
63739 Aschaffenburg
Ph:0 60 21 - 85 83 73
info@mps-ev.de
Hong KongHong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group
hkmpsinfo@gmail.com
HungaryMPS Tarsasagmpstarsasag@gmail.com
ItalyAssociazione Italiana Mucopolisaccaridosi e Malattie Affini (ONLUS)Ph:+39 02 99010188
info@mps-ev.de
JapanThe Japanese Society of the Patients and Families with Mucopolysaccharidoses)
Ph:+39 02 99010188
mps_office@mps-japan.Org
BrazilBrazil Mucopolissacaridoses e outras doenas genticas assemelhadassociedade@mpsbrasil.cjb.net
IrelandThe Irish MPS Societyirishmpssociety@gmail.com
KoreaMPS Society Seoul
NetherlandVolwassen, Kinderen en Stofwisselingsziekteninfo@stofwisselingsziekten.nl
NorwayMPS Society (Norway)mpsnorge@gmail.com
PolandPolish Society of Mucopolysaccharidosis (MPS) and Rare Diseases Ph Toll Free: +48 22 757 81 29
biuro@chorobyrzadkie.pl
SwedenSvenska MPS Foreningenmps.foreningen@gmail.com
SpainSpain MPS Societyinfo@mpsesp.org
SwitzerlandVerein Mukopolysaccharidosen Schweiz Schweizwiesbauer@swissonline.ch
TaiwanTaiwan MPS Societyttmps@ms32.hinet.net
TurkeyMPS LH Dernegimpsturk@gmail.org
United KingdomSociety for Mucopolysaccharide Diseasesmps@mpssociety.coorg.uk

Informational

MPS Diagnostic LaboratoriesA listing of laboratories in the US that provide diagnostic testing of MPS diseases through enzyme orfibroblast analysis.
MPS Genetic CentersA listing of genetic centers in the US that provide diagnostic, treatment, and genetic counseling services.
MPS | ProgramA 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 ReferenceGenetics 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.
The Carol Ann Foundation & International Morquio OrganizationA mutual aid network for people who have Morquio type A.
Online Mendelian Inheritance In MannFollow 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 AllianceAn 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.
Genetic and Rare Diseases Information Center: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.
PubMedA service of the National Library of Medicine, provides access to over 26 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.
BioMarinBioMarin 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.
Sanofi GenzymeSanofi Genzyme is the specialty care global business unit of Sanofi, focused on rare diseases, multiple sclerosis, immunology, and oncology. We help people with debilitating and complex conditions that are often difficult to diagnose and treat. We are dedicated to discovering and advancing new therapies, providing hope to patients and their families around the world.
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 PharmaceuticalShire is a rapidly growing global specialty pharmaceutical company. At Shire, we are champions for people around the world who are struggling with rare diseases – they are at the center of everything we do.
Little People of America:lLittle People of America, Inc., is a nonprofit organization that provides support and information to people of short stature and their families.
The Ryan FoundationThe 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.comMPSIdisease.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.
GeneTests.orgGeneTests entries on several types of Mucopolysaccharidosis.
Aldurazyme.comThe links and information on this website are provided by Genzyme as a resource for information for the treatment of individuals with MPS I.
Hunterpatients.comThe links and information on this website are provided by Shire. It is a 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 NetworkThe 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.comProvides education and information about MPS VI for families, educators, and healthcare providers.
HospiceHospice 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.
Johns Hopkins LSD CenterJohns Hopkins Lysosomal Storage Disease Program is committed to offering comprehensive and personal clinical care for patients with lysosomal storage diseases. The LSD program provides diagnosis, management, treatment and monitoring of diverse treatments available for patients affected with LSD including enzyme replacement therapy, small molecule therapies, hematopoietic stem cell therapy and others.
Transitions: Managing Your Own Healthcare – What Every Teen with an LSD Needs to KnowThis 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 BegunRaises 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.

Government

Center for Medicare and Medicaid Serviceshttps://www.cms.gov
Social Security Onlinehttps://www.ssa.gov
United States Department of Health and Human Serviceshttps://www.hhs.gov
National Disabilities Councilhttps://www.ncd.gov

Lysosomal Disease

CountyOrganization NameContact
AustraliaLysosomal Diseases Australiajohn.hopwood@adelaide.edu.au
FranceVaincre les Maladies LysosomalesPhone: 01 69 75 40 30
New ZealandLysosomal Diseases New Zealandjohn.forman@xtra.co.nz
NorwayLysosomal Diseases NorwayPhone: 64 85 60 00
info@frambu.no
RomaniaFundatia Romana Pentru Bolile Lizozomalegaucher.romania@yahoo.com
United StatesInternational Society for Mannosidosis & Related Diseasesinfo@mannosidosis.org
United StatesNational Tay-Sachs & Allied Diseases Associationinfo@ntsad.org

Advocacy/ Education

Wrightslawhttps://www.wrightslaw.com/

Support

Disability is Naturalwww.longtermcarelink.net
EParent.comwww.eparent.com
National Association for Home Care and Hospiceswww.nahc.org
National Care Planning Councilwww.longtermcarelink.net

 

Helpful Products

Link to purchase disposable swim diapers from My Pool Palwww.mypoolpal.com
Link to Duraline Medical Products for specialty undergarmentswww.dmponline.com
Link to Walgreens to purchase pre-thickened liquids and the powder to thicken your own liquids. The pre-thickened liquids are not available in the store, only online. The powder to thicken your own liquids can be purchased directly at the store.www.walgreens.com
Link to chew toys.www.arktherapeutic.com
Link to Adaptive Mall.com, a resource for medical equipmentadaptivemall.com
Link to Southpaw Enterprises, another source for Chew Toys.southpawenterprises.com
Vehicle Conversionwww.blvd.com

Our Mission

The National MPS Society exists to cure, support and advocate for MPS and ML.

Contact Us Family Support Programs