International Organizations

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.

Website: http://www.hspersunite.org.au
Contact: Frank McKeown at frank@hspersunite.org.au

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.

https://www.aspecbrasil.org.br/

Hereditary Spastic Paraplegia in Canada has partnered with C-Big Research Open Science in an effort to accelerate the search for effective treatments and ultimately, a cure. By joining forces, the organization aims to share data, resources, and expertise, making it easier for scientists to collaborate and push the boundaries of what's possible in rare disease research. This partnership represents a significant step toward offering hope to those living with Hereditary Spastic Paraplegia.

C-Big Research Open Science
C-BIG Repository Multimodal Open Science Biobank (since 2016) Repository AND Patient Registry Patient empowerment Accelerate research on treatments for neurological conditions.

Contact: Linda Lafontaine at Lindajlafontaine@gmail.com 
C-BIG Website: cbigr-open.loris.ca

EURO-HSP is a Federation of national associations related with a Rare Disease called Hereditary Spastic Paraplegia or Strümpell-Lorrain disease. 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.

European HSP Associations include: Stopp-HSP Austria, ATAKSI / HSP (Denmark), Strümpell Lorrain (France), Spierziekten Nederland (Netherlands), HSP Schweiz (Switerland), AIVIPS (Italy), NASPA (Norway), Española de Paraparesia Espástica Familiar (Spain), Hereditär spastisk parapares (Sweden), HSP Support Group (UK), HSP Selbsthilfe (Germany).

Website: eurohsp.eu

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: hsp-info.de

The group helps people diagnosed with Hereditary Spastic Paraplegia (HSP). We are a UK based charity, Registered in England and Wales. Our group was started as a 'self-help' group in 1989 by Stephanie Wyatt to support her affected husband and son. Today we have nearly 400 members, but are always trying to reach more people affected by the condition. So, whether you have HSP, love someone with HSP or are searching for information about a diagnosis, don’t face it alone, join the HSP Support Group today for help, support and practical advice on living with HSP.

Website: hspgroup.org

STOPP-HSP an association dedicated to promoting HSP research in Austria. Our goal: To stop the spread of the hereditary disease Hereditary Spastic Paraplegia (HSP).

Website: stopp-hsp.at

The association for HSP sufferers is committed to raising awareness of this rare disease and promoting exchange between those affected.

HSP stands for Hereditary Spastic Paraparesis or Spinal Paralysis , also known as Strümpel - Lorrain Syndrome .

We are the association for the whole of Switzerland – Suisse, Svizzera, Svizra and Schweiz!

Website: hsp-schweiz.ch

The HSP self-help group brings together people who are specifically seeking information about HSP and interested in managing this condition. We collect and share news about HSP research and initiate/fund HSP research projects. Our goal is to make life with HSP easier and to overcome this rare disease in the long term.

Website: hsp-selbsthilfegruppe.de

Muscle Diseases Netherlands is the association of and for people with a muscle disease. We stand up for the interests of all people with a muscle disease. We believe that people with a muscle disease and their loved ones should be able to choose their own path barrier-free and well-informed and have unhindered access to care, support and treatment that is appropriate for them. However, access to care, medicines and aids is constantly under pressure. Our association therefore stands up for their interests and gets more done because our members share their experiences and join forces with us.

Website; https://www.spierziekten.nl/

The Association for Living with Hereditary Spastic Paraparesis was founded on October 3rd at the Telethon headquarters in Rome. Tiziana, the mother of Marco, a 15-year-old with the disease, posted an ad on the Telethon noticeboard seeking out families experiencing a similar condition. Thus, the first networks were born, driven by the desire to foster an organization where members could meet, learn, and identify with one another nationwide, in the knowledge that, since PSE is a rare disease, only those directly affected could bring its knowledge to the attention of the general public, particularly the medical profession.

Website: aivips.it

NASPA was founded in the spring of 2004, and in the fall of 2006 became affiliated with the Norwegian Disability Association (NHF).
NASPA works with services in the public space for those diagnosed/relatives and professionals, such as Frambu, Beitostølen, etc. We are also working to introduce new public services for those diagnosed/relatives.

The goal of the national association was primarily for us all to meet “like-minded people.” Most people who have some kind of illness find it good to hear that they are not alone in the world.

Website: naspa.no

The Spanish Association of Familial Spastic Paraparesis (AEPEF) brings together, represents and defends the rights of people with FSP and their families.

Website: aepef.org

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.

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: asl-hsp-france.org

Neuroförbundet is an association focusing on neurology. We want to make life easier for everyone who lives with a neurological diagnosis. Our goal is for people who live with neurological diagnoses to have the same opportunities, rights and responsibilities as everyone else.

Website: neuro.se

We are the nationwide association for people with the rare diagnoses of Ataxia or HSP as well as their relatives and other interested parties.

Website: sca-hsp.dk