We maintain two discussion forums, the HSP Listserv and PLS Friends. When you join you these groups you will be able to view previous discussion and ask your own questions. You can also set the level of messages you receive to meet your interest level.
Although these are separate email groups for HSP and PLS, we encourage people to consider joining both groups, as there are many common concerns as well as cross over diagnosis of the conditions. HSP and PLS mimic one another with the same progressive spasticity and weakness of the legs.
There is also a Global Online HSP Community. It is part of the Rare Disease Community website which provides translations in five different languages.
To join, complete the form at HSP Listserv.
Technology for the HSP-L email group is generously donated by the University of Georgia. To subscribe, use the form below. You can also subscribe, unsubscribe, modify your subscription, read/post messages, and access the archives from the University of Georgia’s LISTSERV website. Please refer to the HSP-L FAQ for instructions on getting a password and managing your subscription by email or using the LISTSERV website.
If you are a new user at Yahoo, you will need to register and then you can join the PLS-Friends Group or any other group of interest. If you have trouble, please contact Mark. Mark also operates the PLS-News Group which is designated for news-only postings regarding PLS.
PLS-Friends is a Yahoo Group. Please note that some members have Amyotrophic Lateral Sclerosis (ALS) because PLS can mimic ALS in its early years and those subscribers often remain in the group.
HSP is one of 50 rare disorders included in the RareConnect website. The goal of the website is to help patients understand their condition, connect with other patients and provide tools for living with a rare disease.
Rare Disease Communities is an online social network for patients & families to connect with one and other to support and share vital experiences on aspects of living with a rare disease. Organized into disease specific communities, the platform also provides links to valuable information and involve patient associations in the governance and growth of each community. The project is a joint collaboration between EURORDIS (European Rare Disease Organization) and NORD (National Organization for Rare Disorders).
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.