Useful Links
A list of links to potentially helpful websites that may further offer support and information on MPS diseases.
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.
MPS Societies Around the World
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). The IMPSN acts as an independent forum for MPS Societies and relevant patient associations at a global level.
The (USA) National MPS Society
The US’s National MPS Society has a large number of members involved, so be sure to check out their 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.
https://www.mpssociety.org.uk/
MPS Specific
Morquio syndrome (MPS IV)
BioMarin has launched a site to answer questions for those affected by Morquio A
Cure Sanfilippo Foundation
This American non profit advocates for and funds research directed towards a cure and treatment options for patients with Sanfilippo Syndrome.
Team Sanfilippo
Team Sanfilippo is dedicated to provide assistance to families to gain access to clinical trials, treatments and compassionate use.
Other Organisations
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.
March of Dimes Canada
March of Dimes Canada is a leading national charity committed to championing equity, empowering ability, and creating real change that will help the more than six million people living with disabilities across the country. Their mission is to be Canada’s leading service provider, resource and advocate, empowering people with disabilities to live and thrive in communities nationwide.
https://www.marchofdimes.ca/en-ca
Easter Seals Canada
Easter Seals is Canada’s largest local provider of programs, services, and issues-leadership and development for the disability community. Check out their website for programs and services available in your province. Children’s Wish Foundation of Canada
https://easterseals.ca/en/easter-seals-in-your-province/
The 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”.
Global Genes
Global Genes® is one of the leading rare disease patient advocacy organizations in the world. 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.
The Sibling Support Project
https://siblingsupport.org/resources/
A program dedicated to the interests of brothers and sisters of people with special health and developmental needs. Although this is based in the USA it is a great resource for parents and offers many suggestions for further reading – for both parents and siblings.
Courageous Parent Network
https://courageousparentsnetwork.org/
Courageous Parent Network’s mission is to empower, support, and equip families and providers caring for children with serious illness.
Rare Disease Foundation
https://rarediseasefoundation.org/
The Rare Disease Foundation (RDF) was founded in Vancouver, British Columbia in February 2008. RDF was launched by rare disease patients, caregivers, researchers, and practitioners who shared the same sense of urgency and values about access to resources and research for rare disease patients and their families. Today, the foundation serves a global community with research funding, resources and community programs.
Assist List for Medical Equipment
https://www.assistlist.ca/resources
AssistList is a registered charity in BC that fosters relationships with local organizations to help simplify the exchange of home health equipment in the community. You can sell, donate or exchange home health medical equipment through their website. Using AssistList is completely free!
AssistList accepts home health medical equipment which fall under 6 categories:
- Bathroom safety equipment
- Bedroom equipment
- Daily living aids
- Mobility aids
- Transfer aids
- Vision aids
BC Accessibility Map
A project has started to map out locations that are accessible friendly. The map seems to be filling out with locations in Vancouver and the Lower Mainland, but we hope other locations across Canada will be included soon.