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
Mission: The HSP Research Foundation is a health promotion charity that is a voice for HSP sufferers throughout Australia. It will raise funds for HSP directed research and make applications for funding by Government. It will promote the establishment of gene testing facilities in Australia and maintain a database of affected individuals. The HSPRF will become a focal point for neurologists, scientists, gene counselors and academics as well as sufferers.
ASPEH in Brazil
The HSP organization in Brazil is called ASPEH Brazil and their website (in Portuguese) is: https://www.aspehbrasil.org
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.
A search engine was added to the European HSP homepage. This search engine works in more than 800 abstracts of the last five years concerning HSP. Every HSP related item as well as the names of HSP researchers can be entered as a search string. HSP Search
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.
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-Scandinaviaemail@example.com.
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.
NOTE: There is also a Support Group of HSP-sufferers in Germany which closely cooperates with the Tom-Wahlig-Foundation. The group has already more than 250 members at the beginning of the year 2006. The web site of the group is www.hsp-selbsthilfegruppe.de. The Support Group informs its members about all news to the HSP and gives advice to dealing with the illness. SPF has been proud to have taken part in a study of the group concerning the symptoms of the HSP. A full evaluation will be finished in the spring if the study is completed. Contact the group: Rudolf Kleinsorge firstname.lastname@example.org Lothar Riehl email@example.com.
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.