Useful Websites / Links
NZ Neuromuscular Disease Registry website
Launched September 2011 the NZ Neuromuscular Disease Registry serves to accelerate and facilitate clinical trials for people with neuromuscular conditions. The Registry Curator is Miriam Rodrigues. If you would like to know more about the registry and maybe take part please contact us.
Email registry@mda.org.nz or visit our website: http://www.nmdregistry.co.nz
Neuromuscular websites around the world
Muscular Dystrophy Association (Victoria) - http://www.mda.org.au/
Muscular Dystrophy Association (New South Wales) - http://mdnsw.org.au/
Muscular Dystrophy Association (Western Australia) - http://www.mdwa.org.au/
Muscular Dystrophy Association (Queensland) - http://mdqld.org.au/
Muscular Dystrophy Association (South Australia) - http://mdasa.org.au/
The UK Muscular Dystrophy Campaign - http://www.muscular-dystrophy.org/
The home of MDA USA - http://www.mda.org/
Charcot-Marie-Tooth Disease – http://www.cmt.org.uk/
The Foundation To Support Those Living With Charcot-Marie-Tooth - http://www.hnf-cure.org/
The Friedreichs Ataxia Research Alliance - http://www.curefa.org/
Myotonic Dystrophy Foundation - http://www.myotonic.org/
Networks and research sites
TREAT NMD is a network for people with neuromuscular diseases and professionals working in the field - http://www.treat-nmd.eu/home.php
Support
Provides answers on a broad range of disability topics www.yesdisability.org.nz
Empowering parents, caregivers and whanau who have children with disabilities, health impairments or special needs through support and the provision of information - http://www.parent2parent.org.nz/
Supporting the specific needs of siblings who have brothers or sisters with special needs - http://www.parent2parent.org.nz/start.htm
A Presbyterian Support-facilitated community initiative that offers respite and day activities for younger people with chronic, degenerative neurological conditions - http://www.thebeacon.org.nz/
StarJam offers young people with disabilities the opportunity to stand proudly in the performance spotlight. They get a kick out of it, we get a kick out of it and we promise you’ll get a kick out of it as well! - http://www.starjam.org/
At Diversity New Zealand, we take a unique approach to diversity, seeing it as a means to create healthy, effective change, not an end in itself. We believe in its power to evolve humanity. - http://diversitynz.com/
Sport
Offering people with disabilities the same outdoor pursuit opportunities as people without disabilities www.backup.org.nz
Giving people of any disability the chance to experience a safe surfing and beach experience www.disabledsurfers.co.nz/
Sailing, enriches the lives of people with any type of disability, the elderly, the financially and socially disadvantaged - http://www.sailability.org/nz/newzealand/
Adaptive Snow Sports is about adapting equipment and lessons and providing accessible support systems to allow people with a wide range of disabilities to take to the snow and experience the freedom of snow sports - http://www.disabledsnowsports.org.nz/
Inspire and enable Harbour People to enjoy regular sport & physical activity - http://www.harboursport.co.nz/Information/Disability+Sport/People+with+disabilities.html
General Information
Accessible travel www.enabletravel.biz
Disability Information web site www.weka.net.nz
Your guide to accessible accommodation, activities and products in New Zealand - http://www.accomobility.co.nz/Home.html
The HDC Code of Health and Disability Services Consumers' Rights Regulation 1996 - http://www.hdc.org.nz/theact
Suppliers of home care equipment
There are many suppliers of home care equipment; here are just a few examples:
Invacare - http://www.invacare.co.nz/index.cfm/1,77,0,33,html
Allied Medical - http://www.alliedmedical.co.nz/
Morton Perry - http://www.mortonperry.co.nz/
Medix 21 - http://www.medix21.co.nz/
This is not a definitive list, if you have a website that you think others should know about let us know at Info@mda.org.nz
