We maintain two discussion forums, the HSP List Server 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.
HSP List Serv
To join, complete the form at HSP List Serv.
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.
To join, go to http://health.groups.yahoo.com/group/PLS-FRIENDS/.
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.
Global Online HSP Community
To join, go to http://www.rarediseasecommunities.org/en.
HSP is one of 10 rare disorders included in the Rare Disease Community 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).