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Every attempt is made to provide information about
international organizations for individuals with HSP or
PLS. There is a small handful of groups listed below that
are specific to HSP, which may be open to those with PLS.
There do not appear to be any international organizations
specifically dedicated to PLS, however, many international
ALS or MDA organizations include PLS and/or HSP in their
services.
There is an SPF volunteer in western Canada who is
organizing a regional group for the Pacific
Northwest/Canada. The first Conference was held in
February, 2002. Plans are to hold at least one meeting
per year. Please contact
Jean.
A helpful link is the International
Alliance of ALS/MND Associations, comprised of more
than 50 national patient support and advocacy groups
from over 40 countries worldwide. Of particular note
is the support the ALS Society of British Columbia has
provided to Frank Reyerse, the creator of the first
(lay person's) PLS
website. Although Frank's original diagnosis of
PLS was changed to ALS, he has continued to champion
in the PLS patient community and to maintain the PLS
website. Another resource is the World
Federation of Neurology, which seeks to link researchers
and clinicians worldwide with the goal of finding effective
treatment and a cure for ALS.
Association Strümpell-Lorrain (French
and English)
Philippe Grammont
Association Strümpell-Lorrain
7 D rue des Granges, F 25000 Besançon
Tél. et Fax. : + 33 3 81 83 52 40
Email: asl.spastic@wanadoo.fr
Website: http://assoc.wanadoo.fr/asl.spastic/
Philippe Grammont is able to answer in English, French,
and limited German and Spanish. The ASL has a quarterly
newsletter available (in French). ASL also maintains
an International Registry of people with HSP.
The UK FSP (Familial Spastic Paraplegia)
Support Group
An internet site for the support group covering the
UK, with quarterly newsletters and annual meetings.
Contact information:
David Pearce
FSP Group Secretary
8 Brinkworth Road
Clayhall
Ilford
Essex, IG5 0JS
UK
Email: pearce-david-john@yahoo.co.uk
Website:
http://www.fspgroup.org/
Asociacion Española de Paraparesia
Espastica Familiar (AEPEF) (Spanish)
c/ Plaza de la Malagueta nº 4 Piso 5º A
41020 Sevilla
Presidente Angel Gil Fernandez
Email: aepef@yahoo.es
Website: http://es.geocities.com/aepef/
Group (Spanish) aepef@yahoogroups.com
HSP-Scandinavia
Hans Filipsson has started the HSP-Scandinavia (formerly
HSP-Sweden) YahooGroup community, which provides an
email discussion list for speakers of Swedish, Danish
and Norwegian.
For more information, or to become a member of the
HSP-Scandinavia community, click on the button or link
below. If you are not already a member of Yahoo, you
will need to register in order to join (registration
is free). Questions about the HSP-Scandinavia community
should be directed to HSP-Scandinavia-owner@egroups.com.
The Tom Wahlig Foundation (TWS)
The foundation was been named after its founder - Dr.
Tom Wahlig
It is an independent welfare foundation, organized under
the roof of the Ernst Abbe Foundation and lead by the
founder and two other persons.
The aim of the foundation is to support both research
in the field of the familial spastic spinal paralysis
and persons affected including their relatives.
The foundation holds symposiums and informative events
about this disease.
Dr. Tom Wahlig
Veghestraße 22
48149 Münster
Tel: +49 (0)251 294848 Fax: 278564
Email: Wahlig@t-online.de
Website: http://www.fsp-info.de/
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