General Resources

//General Resources
General Resources 2017-05-29T21:06:54+00:00

General Resources

Part of the Society’s mandate is to offer support and information to families affected by MPS  and to encourage public awareness of MPS diseases. To this end, we’ve provided this list of links to potentially helpful websites.

We hope that you will see this page as a gateway or portal to further learning, and that the information contained on the following sites will complement what you have seen and read on our own website.

The Canadian MPS Society provides these links as a service and is not in any way responsible for the information appearing on these sites, nor does it necessarily endorse, promote or agree with the views and materials appearing on these sites.

Please select from the following categories :

MPS Societies| Related Sites | Other Organizations | Genetic Sites | Wish Foundations

Affected Families’ Pages | Forums & Discussion Groups | Products and Services

MPS Societies 

The International MPS Network

The International MPS Network (IMPSN) comprises of 25 societies around the world, each working to support and educate families affected by MPS & related diseases.  Members of the Network meet annually to discuss issues of common concern and the International MPS Symposia is hosted bi-annually by one of the Network members (the Canadian MPS Society hosted the 10th International MPS Symposia in Vancouver in 2008).  Please visit the IMPSN’s new website to view a map containing all of the member’s locations with links to each member’s website.  On this site, you can also send e-cards for International MPS Awareness Day and view the IMPSN’s Governance document: www.impsn.org.

The (US) National MPS Society

The US’s National MPS Society has a large number of members involved, so be sure to check out their newly revamped website.

The (UK) Society for Mucopolysaccharide Diseases 

Based in the United Kingdom, the Society for MPS Diseases was one of the first MPS societies founded and offers a wealth of  information on all MPS diseases and how to cope as parents of a child with MPS or as an affected adult.

Australian MPS Society

Website for the Austrailian MPS Society. The aim of this site is to support and inform all those who are affected, directly or indirectly, by a mucopolysaccharide or related disease.

MPS-Related Sites 

Argentine Association of Patients with Lysosomal Diseases

APELRA [our Spanish Acronym] was founded on the need of patients with lysosomal diseases and their families to join together to provide each other with mutual assistance while at the same time help new patients.

The National Tay-Sachs & Allied Diseases Association

NSTAD is dedicated to the treatment and prevention of Tay-Sachs and related diseases, and to providing information and support services.

National Neimann-Pick Disease Foundation, Inc.

Provides a great deal of background about NPD, its diagnosis, and genetic studies. It also offers contact and support information for parents and families.

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.

The Myelin Project

Aims to accelerate research on myelin repair. Myelin can be destroyed by hereditary metabolic disorders such as the leukodystrophies.

Hurler, Hurler-Scheie, Scheie syndromes (MPS I)

This website has been developed by Genzyme to provide parents and patients with information and resources on MPS I.

Hunter syndrome (MPS II)

A new site launched by Shire to provide information to individuals with MPS II (Hunter syndrome), their parents and professionals.

Morquio syndrome (MPS IV)

BioMarin has launched a site to answer questions for those affected by MPS IVA.

Maroteaux-Lamy syndrome (MPS VI)

This site, launched by BioMarin has been designed for individuals with MPS VI and their families, and for healthcare professionals who care for MPS VI patients.

Manage MPS VI

BioMarin has launched another site specifically for those affected by MPS VI:

Aldurazyme

This website has been developed by Genzyme to provide parents and patients with information on Aldurazyme.

Naglazyme

This new Biomarin-sponsored site contains content about MPS VI, its diagnosis and treamtment, and much more.

Lysosomal Learning

Lysosomallearning.com is a Genzyme-supported online resource dedicated to raising awareness of lysosomal storage disorders (LSDs).

Global Organisation for Lysosomal Diseases (GOLD)

The new website of the Global Organisation for Lysosomal Diseases (GOLD), this site offers a wealth of information and resources pertaining to LSDs.

Other Organizations 

Orphanet

Orphanet is committed to help all audiences access quality information to provide the means to identify rare disease patients and to contribute to generating knowledge by producing massive, computable, re-usable scientific data.

Health Canada 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.

Canadian Organization for Rare Disorders – CORD 

CORD’s 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.

Global Genes

Global Genes®  is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations.

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).

National Organization for Rare Disorders, Inc. – NORD 

NORD’s website is a very important site for the rare disease community. NORD has been working since 1983 toward 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

NORD’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

The World Health Organization Site. It 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

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

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.

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.

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.

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 Lab for Lysosomal, Peroxisomal and Related 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.

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.

Wish Foundations 

Children’s Wish Foundation of Canada

The Children’s Wish Foundation of Canada is the only all-Canadian organization dedicated to fulfilling a unique lifetime experience for children (ages 3 up to 18) coping with a high risk, life-threatening illness. Each wish– travel, celebrity or item– is an individual adventure, carefully structured to meet the needs of that particular child. Whatever the wish, the whole family shares the excitement in “helping kids be kids again”. For more information about referrals please contact 1-800-267-WISH (9474).

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

Personal Websites of Affected Families 

The Isaac Foundation

Our son Isaac was diagnosed with MPS VI in October 2005, which prompted us to form our foundation. The Isaac Foundation’s goal is to raise money to support research into MPS VI and assist projects that aim to explore new treatments and possible cures.

Trey Purcell’s homepage

A source of information and advocacy relating to Mucopolysaccharidosis type II, and the portal for the MPS II fund.

Jonah’s Just Begun

Jonah’s Just Begun-Foundation to Cure Sanfilippo Inc. is a 501(c)3. The foundation raises funds then distributes them to academic research groups focused on finding treatments for Sanfilippo Syndrome, MPS III.  JJB was formed in 2011 after parents Jill Wood and Jeremy Weishaar after their son Jonah was diagnosed with Sanfilippo Type C.

Welcome to DJ’s Homepage

This page is about a young boy diagnosed with Tay-Sachs disease. DJ lives in the Chicago, IL area. His parents have included some helpful links to related Tay-Sachs pages.

Jacob’s Reach

This page is about Jacob, a young boy diagnosed with Neimann-Pick Type C disease. The page contains photos and personal stories, and an updated progress report on Jacob.

Hunter’s Hope

Hunter’s Hope was formed in 1997 after Hunter was diagnosed with Krabbes Disease (Globoid-Cell Leukodystrophy). Hunter’s Story is linked from this page.

Forums and Discussion Groups 

Ability OnLine Support Network

This site contains an electronic network for children and youths with disabilities, and their families.

SpeciaLink

SpeciaLink aims to provide a resource and research helpline. It provides personalized responses to specific questions, referrals to other organizations, and sources of help, information, and technical assistance.

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.

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.

Adam.com

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.

Download these educational materials here. New members will receive copies of educational materials with their welcome package and as new items become available.

General Resources

 

Understanding MPS and Related Diseases – Is Your Child Having an Anesthetic? (english)

 

Download

Guide pour mieux comprendre les MPS et les maladies apparentées – Votre enfant doit-il subir une anesthésie? (french)

 

Download

Glossary of MPS Terms (2012) (english)

 

 

Download