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Family Support > Links

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

Country

Organization Name Contact
Australia Mucopolysaccharide & Related Diseases Society Australia Ltd. PO Box 623 Hornsby, NSW 2077
Australia
Ph: 612.9476.8411
Fax: 612.9476.8422
info@mpssociety.org.au
Austria Gesellschaft Fur Mukopolysaccharidosen und Ahnliche Erkrankungen office@mps-austria.at
Canada Canadian Society for Mucopolysaccharide and Related Diseases Inc. kirstn@mpssociety.ca
United Kingdom Society for Mucopolysaccharide Diseases http://www.mpssociety.co.uk/international_contacts.htm
Germany Gesellschaft fur Mukopolysaccharidosen e. V.:
www.mps-ev.de
www.mps-ev@t-online.de
info@mps-ev.de
Hong Kong Hong Kong Mucopolysaccharide & Rare Genetic Diseases Mutual Aid Group www.hk-mps.com
Hungary hegbiro@elgi.hu
Italy Associazione Italiana Mucopolisaccaridosi e Malattie Affini (ONLUS) or Italian MPS Society (Charity)

Via Savona, 13 - 20144 Milano - Italy
Ph: 02-83241292
F ax: 02-89425180
presidente@mucopolisaccaridosi.it

Japan Japanese Society of the Patients and Families with Mucopolysaccharidosis rxf02601@nifty.ne.jp
Brazil Brazil Mucopolissacaridoses e outras doen?as gen?ticas assemelhadas sociedade@mpsbrasil.cjb.net
Croatia zalravao.colic@etk.erieson.se
Czech Republic jan.michalik@volny.cz
Korea www.mps.or.kr
Poland www.mps.sart.pl
Sweden www.mpsforeningen.fub.se
Spainwww.mpsesp.org

Lysosomal Disease

Country

Organization Name Contact
Australia Lysosomal Diseases Australia john.hopwood@adelaide.edu.au
France Association Vaincre les Maladies Rarevml@vml-asso.org
New Zealand Lysosomal Diseases New Zealand john.forman@xtra.co.nz
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 NTSAD-Boston@worldnet.att.net

Informational
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. 1 AMA PRA Category 1 Creditâ„¢ 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.
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.
Global Organization of Lysosomal Diseases (GOLD): 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.
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.
Lysosomal Learning 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
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 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.com

Provides education and information about MPS VI for families, educators, and healthcare providers

MPS6CESS FoundationThe 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.
General Health
Dr. Koop.com www.drkoop.com
PDR Health www.gettingwell.com
Government
Center for Medicare and Medicaid Services http://www.cms.gov/medicaid/1915c/proginfo.asp
Social Security Online http://www.ssa.gov/
United States Department of Health and Human Services http://www.os.dhhs.gov/
Links to government and healthcare sites of interest http://www.khha.org/sitesfr.htm
National Disabilities Council http://www.ncd.gov
Advocacy/ Education
Wrightslaw http://www.wrightslaw.com/
Special Needs for Parents (SNAP) http://www.snapinfo.org/index.html
Support
Disability is Natural http://www.disabilityisnatural.com/
EParent.com www.eparent.com
Parent's magazine support site http://www.parents.com
National Association for Home Care and Hospice's http://www.khha.org/nahcfr.htm
Long Term Care Link http://www.longtermcarelink.net/
Helpful Products
Link to purchase disposable swim diapers fromMy Pool Pal http://www.mypoolpal.com
Link to Duraline Medical Products to purchase reusable swim diapers http://www.dmponline.com
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.arktherapeuticservices.com
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://www.southpawenterprises.com
Vehicle Conversion http://www.blvd.com/Accessible_Vehicles/

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