Self-Help, Management & Treatment, Related Disorders
Get Help with Depression
Read about ‘Beating the Blues‘.
Lifeline 13 11 14 – 24hr phone counselling service.
Salvo Care Line 1 300 363 622 – 24hr phone counselling service and referral.
SANE Helpline 1 800 187 263 – information, referral and advice; not counselling.
BeyondBlue – http://www.beyondblue.org.au – Australian national depression initiative; not a crisis service.
All these services are completely confidential.
Mobility Management
http://members.physiotherapy.asn.au/source/members/apa_MemberSearch.cfm?search=FP – An Australian Directory of Physios
Support Organisations
http://www.shout.org.au – Self Help Organisations United Together
National Organisation for Rare Disorders
Disability Information and Resource Centre – South Australia
Genes & Testing
Australian Gene Testing Service for HSP
Concord Molecular Medicine Laboratory of the Sydney South West Area Health Service
http://www.cs.nsw.gov.au/csls/handbook
Centre for Genetics Education – NSW Health
Association of Genetic Support of Australasia
http://www.agsa-geneticsupport.org.au
Genetic Support Council – Western Australia
http://www.geneticsupportcouncil.org.au
Human Genome Variation Society
GeneTests – US site
Global HSP Support Organisations
SP Foundation USA
A well-resourced site for the US and global SP communities for both HSP & PLS (Primary Lateral Sclerosis).
- Patient Forum – a vast range of information, support and interaction including Email Support Groups – join a listserve and get the latest information regularly by email. Take part in live chat sessions.
- Glossary - definitions and explanations of everything to do with HSP
- Research Archives – an important compendium of knowledge about HSP.
The Hereditary Spastic Paraplegia Support Group
This is the home of the UK group – also have some European members. They produce newsletters, hold an annual meeting, regional meetings, run a help-line and maintain a library.
HSP – Selbsthilfegruppe
http://www.hsp-selbsthilfegruppe.de
This group in Germany are very active, with a number of regional groups and an important international presence. They are well connected with and highly involved in the research community with a focus on both genetic research and research into management and treatment of HSP. They provide support for German HSPers on everything from medical insurance, housing, nursing care, vehicles and work / leisure issues.
If you want to read the site in English, copy and paste the web address into a Google Search, and when the corresponding item comes up in the search results, you will see ‘Translate this page’ beside the title. Click on that and you will get an approximate English translation.
Association Strümpell-Lorrain
http://asso.orpha.net/ASL/index.htm
This is the French Association who are active supporters of the European alliance.
If you want to read the site in English, copy and paste the web address into a Google Search, and when the corresponding item comes up in the search results, you will see ‘Translate this page’ beside the title. Click on that and you will get an approximate English translation.
Asociación Española de Paraparesia Espástica Familiar
http://www.aepef.org/
This is the Spanish site – with almost 18,000 visits since 2002 – making them as long standing as any HSP site anywhere and with a lot of interest.
If you want to read the site in English, copy and paste the web address into a Google Search, and when the corresponding item comes up in the search results, you will see ‘Translate this page’ beside the title. Click on that and you will get an approximate English translation.
LASPA – The Norwegian Association for HSP
Landsforeningen for Arvelig – Spastisk Paraparese/-Ataksi. Norway
The HSP-Support Group Europe
This is an umbrella group for HSPers from all over Europe. They express a desire for broad collaboration and pooled resources to find a cure for HSP.
European FSP Support Groups
http://assoc.orange.fr/asl.spastic/fichierslies/spatax/EUROPEAN%20FSP%20SUPPORT%20GROUPS.htm
This page has information for HSP / FSP support groups in Europe, covering many countries.
Dr. Fink’s site – University of Michigan
Dr. John K. Fink is the Director of the Neurogenetic Disorders Clinic which is part of the world-renowned University of Michigan Health System that includes a broad range of medical research and a large teaching hospital in Ann Arbor. Dr. Fink is a world leader and acknowledged expert on HSP, and is actively involved in HSP research.