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.
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.
Jean Chambers, an SPF board member who lives in Canada, organizes Connection events there. Please contact email@example.com.
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.
Denmark, Kåre Pedersen, firstname.lastname@example.org
France, Philippe Grammont, email@example.com
Great Britain, Ian Bennett, firstname.lastname@example.org
Spain, Francisco Rodriguez, email@example.com
Norway, Ingerid Ringheim, firstname.lastname@example.org
Iceland, Sigurdur H. Pétursson, email@example.com
Germany, Rudolf Kleinsorge, firstname.lastname@example.org
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
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 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.
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.
In 2015 almost a dozen HSP Patient Advocacy Organizations from all over the world met in Madrid Spain to join forces to establish an international connection and resource to make sure a first rate, well established and impeccable HSP Patient Registry is set up. This will allow our next Clinical Trials to go forward smoothly and effectively. Good communication channels have also been established so as to allow for a smooth flow of information among scientists and organizations such as The Spastic Paraplegia Foundation.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors, CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.