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.
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.
Australian HSP Support Group and Foundation
The HSP Research Foundation was created in 2005 to find an effective treatment for Hereditary Spastic Paraplegias (HSPs). The Foundation is an incorporated, registered Australian charity that facilitates and funds research to find effective treatments and cures. The Foundation is also the community hub for people with HSP in Australia, creating awareness and providing information, education, and support. Our HSP community numbers over 800, with about half that number who have the condition. We believe that what is good for anyone with HSP anywhere will probably be good for everyone with HSP everywhere, and see collaboration as a source of strength and progress for the global community of people with HSPs.
ASPEC in Brasil
ASPEC Brasil (initially called ASPEH Brasil) was founded in 2017 with the intent of improving the quality of life for people with HSP, caregivers and families through the delivery of relative information and the sharing of experiences. In 2020, ASPEC Brasil expanded to do the same for families affected by Primary Lateral Sclerosis (PLS), Tropical Spastic Paraparesis, Stiff-Person Syndrome and Sjögren-Larsson Syndrome.
SPF in Canada
Jean Chambers, an SPF board member who lives in Canada, organizes Connection events there. Please contact firstname.lastname@example.org.
HSP Group formed in Europe
The HSP groups of France, the UK, Spain, Norway, Iceland and Germany are in the process of building a European HSP-group. Other countries are expected to participate as well.
Association Strümpell-Lorrain (French)
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 Tom Wahlig Foundation (German)
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.
Asociacion Española de Paraparesia Espastica Familiar (AEPEF) (Spanish)
UK HSP Support Group
An internet site for the support group covering the UK, with quarterly newsletters and annual meetings.
2015 Tom Wahlig Symposium in Graz Austria
European Reference Network for Rare Neurological Diseases
European Reference Networks (ERNs) are virtual networks aiming to connect healthcare professionals across Europe to increase the chances of a diagnostic for patients affected by rare diseases, in this case rare neurological diseases. There are currently 24 ERNs. In other words, ERNs facilitate the flow of specialist knowledge across Europe and help patients in getting accurate diagnostic, treatment and care.