Hereditary Spastic Paraplegia community

Here's a selection of information from patients & professionals to better understand Hereditary Spastic Paraplegia.

Hereditary Spastic Paraplegia resources

Hereditary Spastic Paraplegia Frequently Asked Questions

Here are some of the most frequently asked questions and their answers:

If you are a patient or carer with a question about living with HSP, about treatments, or other relevant information please email your question to FAQ@rarediseasecommunities.org and we will put it to the specialists who have agreed to answer your questions from time to time.

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How is HSP diagnosed?

HSP is diagnosed via a careful clinical examination, by excluding other disorders that cause spasticity and weakness in the legs, and by an observation period to see if other symptoms develop that ...

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How does HSP cause symptoms?

HSP is caused by degeneration of the upper motor neurons in the brain and spinal cord. Upper motor neurons control voluntary movement.

The cell bodies of these neurons are located in the motor c...

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Why are my symptoms different from others in my family?

As noted before, the severity of symptoms and age of onset can vary widely, even within the same family. One reason is that HSP is a group of genetically different disorders, not a single disorder....

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What are the symptoms of HSP?

The hallmark of HSP is progressive difficulty walking due to increasingly weak and stiff (spastic) muscles. Symptoms appear in most people between the second and fourth decade of life, but they can...

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What is HSP?

Hereditary Spastic Paraplegia (HSP) is a group of rare, inherited neurological disorders. Their primary symptoms are progressive spasticity and weakness of the leg and hip muscles. Researchers esti...

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Hereditary Spastic Paraplegia Patient Groups

These are patient organisations that have experience and expertise in Hereditary Spastic Paraplegia. They are supporters of this website. Contact them for more information on their activities.

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  • Danish HSP Assoc.

    Om foreningen Vi er en lille landsdækkende forening for personer med de sjældne diagnoser Ataksi eller HSP samt deres pårørende og andre interesserede. Foreningens økonomi er baseret på kontingenter og bevilgede midler. Desuden søges der fonde og puljer, lige som der søges offentlige og andre tilskud. Bestyrelsen arbejder til gavn for foreningens medlemmer, både børn og voksne, ved bl.a. at gennemføre arrangementer og projekter til fælles glæde, fx temamøder og rekreationsophold. Medlemmers hjælpere har fri adgang til foreningens arrangementer. Bestyrelsen afholder bestyrelsesmøde 5-6 gange årligt efter behov. De mange opgaver uddelegeres fortrinsvis til udvalg, hvoraf foreningen har 3 stående udvalg, der holder møde 1-2 gange årligt efter behov, nemlig: * Fundraisingudvalg * Temamødeudvalg * Projektudvalg Foreningen tilbyder: * Bisidder, dvs. en person der lytter med ved møder hos fx kommunen * Kontaktperson, dvs. et bestyrelsesmedlem der står til rådighed med hjælp og vejledning * Netværksgrupper. Vi har en støttegruppe/samtalegruppe for MJD, Ataksi og HSP * Debatside, hvor alle kan debattere sygdom og deraf følgende problemer

    Contact Danish HSP Assoc.

  • A.SL-HSP France

    L'Association, fondée depuis 1992 par Philippe GRAMMONT, est animée par des personnes elles-mêmes atteintes, afin venir en aide et lutter contre l'isolement des malades et leur entourage, encourager la recherche génétique, neurologique, fonctionnelle leur permettant de vivre au mieux avec cette maladie. L'Association représente aujourd'hui 550 familles adhérentes. Afin d'entretenir des contacts étroits entre les malades, l'A.S.L est constituée de représentants présents localement à travers la France et organise avec l'Espagne la mise en place d'un réseau associatif européen.

    Contact A.SL-HSP France

  • Spanish HSP Assoc.

    Asociaciçon Española de Paraparesia Espástica Familiar ¿Qué es la AEPEF? La Asociación Española de Paraparesia Espástica Familiar es una Organización No Gubernamental y sin ánimo de lucro creada el 19 de octubre de 2002 en Sevilla por un grupo de enfermos y familiares (Nº de registro 170.095 en el Registro Nacional de Asociaciones y número 876 de la Sección 3ª en el Registro Provincial de Asociaciones de Sevilla). Tambien estamos registrados en el Ayuntamiento de Madrid en la categoría de ASOCIACIONES DE CARÁCTER SOCIAL con el número 01564. Sus fines son agrupar a los enfermos, potenciar la investigación y dar a conocer esta patología. Está formada por personas afectadas por esta enfermedad y sus familiares. Julio 2010 - AEPEF asociación de Utilidad Pública Con fecha 15 de julio el Ministerio de Interior ha declarado a la Asociación Española de Paraparesia Espástica Familiar Strümpell-Lorrain, asociación Nacional de Utilidad Pública. Memoria APEF 2011: http://asp-es.secure-zone.net/v2/index.jsp?id=3/3195/6811&lng=es

    Contact Spanish HSP Assoc.

  • Italian Assoc. for Living with SP

    'associazione nasce ufficialmente il 3 ottobre 2009 presso la sede di Telethon a Roma; l'idea dell'associazione nasce alcuni mesi prima, quando la signora Tiziana mamma di Marco, ragazzo di 15 anni affetto dalla malattia, mette nella bacheca Telethon un annuncio per cercare dei contatti con altre persone malate di paraparesi spastica. Grazie a questo annuncio diverse famiglie si sono messe in contatto tra loro e, con la collaborazione degli amici di Telethon, hanno dato vita all'associazione.

    Contact Italian Assoc. for Living with SP

  • Holland Asoc. of Neuromusc. Disease

    De Vereniging Spierziekten Nederland komt op voor mensen met een spierziekte. It is the VSN to improve the quality of care. Het gaat de VSN om een betere kwaliteit van de zorg. Effective scientific research. Effectief wetenschappelijk onderzoek. Good information and information for doctors and professionals. Goede voorlichting en informatie, ook voor artsen en professionele hulpverleners. Since 1967 the VSN put the job done. Al sinds 1967 zet de VSN zich hiervoor in.

    Contact Holland Asoc. of Neuromusc. Disease

  • Spastic Paraplegia Foundation

    The Spastic Paraplegia Foundation, Inc. (SPF) is a national, not-for-profit, voluntary organization incorporated in February, 2002. It is the only organization in North America dedicated to finding a cure by advancing diagnostic, research, and treatment efforts for two closely related degenerative upper motor neuron diseases, Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS). We are committed to providing information, creating opportunities for mutual support, and discovering the cures for Hereditary Spastic Paraplegia and Primary Lateral Sclerosis by funding research.

    Contact Spastic Paraplegia Foundation

  • UK HSP Group

    The Group helps members (now over 300) and assists research. The Group aims to encourage and support members and to assist research. We have recently provided grants to teams researching aspects of the condition and we regularly publish information about HSP and the Group to our members. The Group provides various ways for members to keep up-to-date and communicate with each other: * An Annual General Meeting featuring lectures by FSP/HSP specialists. * Regional meetings are held twice a year in some of our regions. * A newsletter published to our members quarterly * A telephone and e-mail help-line offering advice and support to members. * A library of information articles on HSP. * An Information Booklet is published to members containing a synopsis of helpful items. * Grants are provided to members to help with the purchase of mobility aids * Research Grants are provided in support of projects researching aspects of the condition * An e-mail discussion group system allows members to share information and experiences

    Contact UK HSP Group

  • NASPA Norway

    Vi er en landsforening med rundt 200 medlemmer som har kommet sammen gjennom Chantal Tallaksen, overlege ved nevrologisk avdeling på Ullevål Universitetssykehus i Oslo. Chantal har jobbet med sykdommen i flere år i Frankrike, men har senere flyttet til Norge for å jobbe her. Landsforeningen ble stiftet våren 2004, og ble høsten 2006 tilknyttet Norges Handikapforbund. We are an association with about 200 members who have come together through Chantal Tallaksen, chief physician at the Neurological Department at Ullevaal University Hospital in Oslo. Chantal has worked with the disease for several years in France, but has since moved to Norway to work here. National Association was founded in spring 2004 and autumn 2006 were associated with the Norwegian Association of the Disabled.

    Contact NASPA Norway

  • Euro HSP

    EURO HSP is a Federation of national groups related with a Rare Disease called Hereditary Spastic Paraplegia or Strümpell-Lorrain disease. The federation was made up during the project Rare!Together from EURORDIS.

    Contact Euro HSP

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Hereditary Spastic Paraplegia Documents

Resources, documents and detailed informations on Hereditary Spastic Paraplegia. In this section you can download brochures, ask for printed documents or find useful links.

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Hereditary Spastic Paraplegia Articles

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Orphanet: Hereditary spastic paraplegias (2006)

Hereditary spastic paraplegias (HSP) comprise a genetically and clinically heterogeneous group of neurodegenerative disorders characterized by progressive spasticity and hyperreflexia of the lower ...

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HSP Article (EN)

Hereditary Spastic Paraplegia or HSP is a term for a group of rare, inherited neurologic disorders along the motor neuron disease continuum. Their primary symptom is progressive spasticity (stiffne...

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Hereditary Spastic Paraplegia Events

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Hereditary Spastic Paraplegia community news

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