• The Canadian MPS Society
  This is the old homepage of the Canadian MPS Society. You will find that most of the information has been ported over and enhanced at our current site.

   

• The National MPS Society
  This is the homepage of one of our "sister" societies, based in the United States. The National MPS Society has a large number of members involved, so be sure to check out their newly revamped website.

   

• The Society for Mucopolysaccharide Diseases (UK)
  This is the homepage of one of our "sister" societies, based in the United Kingdom. The Society for MPS Diseases offers good information on the MPS Diseases and how to cope as parents of an MPS child.

   

• Irish Mucopolysaccharide Society
  This page is limited in scope at this time, but provides contact information for the chairwoman of the society, which was founded in 1995.

   

MPS-Related Sites

• The National Tay-Sachs & Allied Diseases Association (NSTAD)
  NSTAD is dedicated to the treatment and prevention of Tay-Sachs and related diseases, and to providing information and support services to individuals and families affected by these diseases, as well as the public at large.

   

• National Neimann-Pick Disease Foundation, Inc.
  This is the homepage of the Foundation, and provides a great deal of background about NPD, its diagnosis, and genetic studies. It also offers contact and support information for parents and families.

   

• Centre for Rare Disorders, National Hospital - Oslo, Norway
  This page provides technical information on two of the Society's related diseases, namely Metachromatic Leukodystrophy (MLD) and Tay-Sachs Syndrome.

   

• United Leukodystrophy Foundation
  The ULF is a voluntary health organization dedicated to providing patients and their families with information about diseases and assistance available. Leukodystrophies are a group of genetic nervous system disorders affecting the myelin sheath, which insulates the axon through which nerve impulses are conducted. This site contains information about each of the leukodystrophies, including MLD and Krabbes disease.

   

• The Myelin Project
  The Myelin Project aims to accelerate research on myelin repair. Myelin can be destroyed by hereditary metabolic disorders such as the leukodystrophies. This page provides technical articles and updates about the latest reasearch and projects.

   

• Krabbe's Family Network
  This site is designed to assist families whose children have Krabbes Leukodystrophy. There are links for the latest news, a message board, information on the disease and therapies, as well as family stories and advice for raising a "Krabbes Kid".

   

• Hunter's Syndrome and Genetic Advances: A Mother's Options
  This page gives information on Hunter's Syndrome, the only MPS disease whose heredity occurs through an x-linked recessive gene. The page offers information on Hunter's Syndrome, and offers information on the ethical issues involved in a pregnancy where the mother is a carrier of Hunter. The site offers a concise breakdown of the dilemmas, and the options available.
  
  
• Adam.com
  This website contains a database of information on health, diseases, and treatments. Several of the MPS diseases are located by typing in the disease name in the search box. The website offers information on the diseases, and also provides excellent definitions on terms relating to MPS diseases.

• www.mightymitch.homestead.com
  Well...Our Special boy Mitchell Scott Jays was born on 9 June 1999 reasonably normal, he was born with a lung problem little did we know just how sick he actually was.

Other Organizations

• Health Canada Online
  This is the online website for Health Canada, and contains many resources on all aspects of personal health. It also includes recent news and government articles regarding Canada's healthcare system.

   

• National Information Center for Children and Youth with Disabilities
  NICHCY, based in Washington, DC, is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals. Their special focus is children and youth (birth to age 22).

   

• Canadian Organization for Rare Disorders - CORD
  CORD is a very important Canadian site whose goals are to distribute information about rare disorders, to encourage medical research into their causes and effects, and to increase public awareness about their existence. There is also a list of CORD Support Organizations, with contact details.

   

• The Roeher Institute
  A leading organization in Canada for the promotion of equality of people with intellectual and other disabilities. The institute raises awareness about barriers that affect the full participation in life of those with disabilities, and offers publications and information services.

   

• National Organization for Rare Disorders, Inc. - NORD
  NORD is a very important site in the rare disease community. Nord has been working since 1983 towards the prevention, treatment and cure of rare "orphan" diseases. The site offers information on newsletters, programs, services and products. It also has links to databases of diseases, drugs and related organizations.

   

• National Institutes of Health: Office of Rare Diseases
  ORD's website includes links to definitions, causes, treatments and publications about rare diseases. There is an extensive list of rare diseases, and a helpful online glossary.

• World Health Organization
  This is the homepage of the World Health Organization, and contains up-to-date information on current health issues. There is limited information on genetic diseases, but the page may provide useful contact information.

   

• Premier's Council on the Status of Disabled Persons
  A resource from New Brunswick, Canada. This page lists the names and contact information for associations and government services in New Brunswick that offer services for people with disabilities.

   

• The STARBRIGHT Foundation
  The STARBRIGHT Foundation is dedicated to the development of projects that empower seriously ill children to combat the medical and emotional challenges they face on a daily basis. Check out the current projects that STARBRIGHT is working on, by combining technology, healthcare, entertainment and kids.

   

• The Sibling Support Project
  This website is a national program dedicated to the interests of brothers and sisters of people with special health and developmental needs. It is a great resource for parents, and offers many suggestions for further reading - for both parents and siblings.

   

• National Parent Information Network (NPIN)
  NPIN is a project whose goal is to provide and encourage the exchange of parenting materials among all parents and educators. This page gives information on accessing useful parenting articles online, via their catalog of publications or through a bi-monthly magazine.

   

• Pacer Center
  Pacer's mission is to enhance the quality of life for children and young adults with disabilities through the programs, information, and technical assistance that it offers to parents. It equips parents with the ability to effectively represent their children's needs and rights.

   

• The Beach Center for Families and Disability
  The Beach Center is a research and training center on public policy affecting families who have children with disabilities. The "Research Briefs" link contains excellent articles about raising children with disabilities.

   

• Family Education Network
  This site contains useful parenting articles and resources. It includes great parenting ideas and offers an "Ask the Experts" section.

   

• The Institute on Disability in New Hampshire
  This website offers a number of publications relating to care, education and transition to adult life that are helpful to parents of children with disabilities.

   

• Inclusion Press International
  This site offers several publications with topics focussing on inclusion of your child into the mainstream at school and in the community.

   

• Family Village: A Global Community of Disability-Related Resources
  This website integrates information, resources and communication opportunities for persons with disabilities, their families and caregivers. There are resources on diagnoses, adaptive products, adaptive recreational activities, education, worship, health issues and more. The page is laid out just like a "live" village, and is easy to navigate.

   

• Genetic / Rare Conditions: Support Groups and Information
  This page provides information on a number of rare diseases, including MPS and some of the allied diseases. It also has links to related organizations and websites.

   

• National Respite Locator Service
  This site helps parents and caregivers of children with disabilities to find respite services in their local area. Respite provide families with a much-needed break through temporary care, which can be arranged to suit the family's needs. A Canadian listing is available on this page.

   

Genetic Sites

• Blazing a Genetic Trail
  This site is a report from the Howard Hughes Medical Institute, and is well worth a visit. It contains valuable genetic findings as families and specialists seek to isolate the genes that cause lethal diseases.

   

• Blazing a Genetic Trail: A Brief Key to Basis Genetics
  For those that are new to studying genetic diseases, this page offers a clear introduction to genetics, defining cells, the nucleus, choromosomes and proteins.

   

• Blazing a Genetic Trail: How Genetic Disorders are Inherited
  For those that are new to genetic diseases and heredity, this page offers a pictorial explanation of how diseases are inherited - including dominant, recessive and x-linked patterns of inheritance.

   

• The Dictionary of Cell Biology
  This site offers pictures and definitions of genetic concepts - from DNA to cell division, its Biology 101!

   

• National Library of Medicine: PubMed
  This is a medical search engine which can access 9 million citations in MedLine, including clinical reports and articles from online medical journals.

   

• Australasian Referral Laboratory for Lysosomal, Peroxisomal and Related Genetic Disorders
  This page is hosted by the Department of Chemical Pathology at the Women's and Children's Hospital in Australia. Check the "Lab News" link for the latest medical findings.

   

• GeneCards: Human Genes, Proteins and Diseases
  GeneCards is a dataase of human genes, their products and their involvement in diseases. It offers concise infomration about the functions of humans genes. Searches bring up all relevant GeneCards, to make a selection from. This page is linked to other major databases including OMIM, PubMed, UDB and GDB.

   

• Medicine Online (MOL)
  MOL is the Medical Information Supersite, and provides up-to-date medical resources, medical information, and medical references. There is a medical dictionary and built-in search engine.

   

• National Center for Biotechnology Information
  This is a central site by which a large number of databases, search engines and articles can be accessed. It provides links to great genetic-based sites such as OMIM, PubMed, Entrez and Blast. For technical information, be sure to bookmark this page.

   

• National Center for Biotechnology Information: OMIM HomePage
  This page accesses a massive database of human genes and genetic disorders. It contains very technical information about the lysosomal storage disorders, with very specific accounts, clinical reports and gene maps. Well worth the time, as the information is invaluable!

   

• National Center for Biotechnology Information: OMIM Search Engine
  The is the OMIM search page, where you can enter search criteria to search the database's articles, gene maps and morbid maps. You can also search only for recent records.

   

• Rare Genetic Diseases in Children: An Internet Resources Gateway
  This page, developed by Paul Murphy, offers links to a number of popular sites in the MPS community. Among these are Human Genetic Diseases: A Layman's Approach, Lysosomal Disease Reference Chart, Gateway to Message Forums, and Taryn's World.

   

• Rare Genetic Diseases In Children: An Internet Resource Gateway
  This site is a must-see. An online guide titled "Human Genetic Disease: A Layman's Approach" contains an introduction, five detailed chapters, and a glossary. Chapters 1-4 emphasize the basic science of cells and an introduction to genetic information and are meant to act as a simplified primer on these topics so that the reader can be brought up to speed. Chapter 5 covers current issues, treatments, and gene therapy.

   

• Entrez
  Entrez is hosted by the National Center for Biotechnology Information, and is another viable search engine. It has access to genetic databases, including the PubMed, Protein, Nucleotide, 3D Structure and Genomes databases.

   

• Medical Genetics Program: Baylor College of Medicine
  This page offers a Patient Literature section, which includes articles on such topics as Genetic Screening, Amniocentesis, and Chorionic Villus Sampling, which help to address the questions many parents have in a clear, easy to understand format.

   

• CenterWatch: Clinical Trials Listing Service
  This page offers information related to clinical trials. CenterWatch is designed as a resource both for patients interested in participating in clinical trials, and for research professionals. It contains a number of great links, including information articles and up-to-date news on current testing.

   

• Canadian Directory of Genetic Support Groups
  This page offers a searchable database for those seeking information on genetic support groups in Canada.

   

• Ashkenazi Jewish Genetic Disease Screen
  The NYU Medical Center offers molecular genetics testing for four common inherited diseases in the Jewish population: Tay-Sachs disease, Canavan disease, cystic fibrosis and Gaucher disease.

   

• Pediatric Database (PEDBASE): Mucopolysaccharidosis
  This site gives a concise overview of the definitio, historical aspects and clinical features of Mucopolysaccharidosis.

   

• Neurogenetics, Gene Therapy and Molecular Mimicry
  The Neurogenetics Laboratory at the NYU School of Medicine is studying the causes of inherited diseases and more effective means of treatment. Part of their research focuses on Mucolipidosis IV and GM-2 Gangliosidosis (Tay-Sachs disease).

   

• The BabyNet: Genetic Testing and Gene Therapy
  This is an article on The Babynet's website, which provides an overview of what a gene is, what genetic testing it, what is involved in getting genetic testing, and the medical and moral issues behind the subject.

   

Forums and Discussion Groups

• Ability OnLine Support Network
  This site contains an electronic network for children and youths with disabilities, and their families.

   

Wish Foundations

• Make-A-Wish-Foundation
  The Make-A-Wish-Foundation is the largest wish-granting organization in the world, with 81 chapters in the U.S.A and 18 international affiliates. The website provides all relevants facts and outlines the 4 steps involved in granting a wish for children with life-threatening illnesses: 1) Wish Referral, 2) Determining Eligibility, 3) Identifying the Wish and 4) Granting the Wish.

   

Products and Services

• Exceptional Parent Magazine
  This is the homepage of Exceptional Parent, a magazine designed for parents with "exceptional" children. The features and articles in this magazine focus on reaching out to parents, focussing on real problems and concerns, and sharing ideas and experiences. There is also an online subscription form.

   

• Sunrise Medical - Kid Kart
  This company offers a product called the Kid-Kart, which offers parents with challenged children a means of accessibility to an active lifestyle. The company offers different styles of large-sized strollers with supports, and have both online pictures and an order form for a hardcopy brochure. Check out the innovative designs.

   

• Dragonfly Toy Company
  A distributor of toys, books, and computer programs designed specifically for children with special needs and their families. They provide online sales, and allow you to search their catalog based on criteria about your child's special needs.

   

• U.S. Pharamacopeia - USP
  This page offers current information on drugs, drug standards, pharmaceutical manufacturers, and helpful publications. Check the "Patients and Consumers" link for recent articles.

   

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