Join the HSP community

We welcome new members to the HSP community!

HSPers getting together socially

People with HSP, family members, friends and carers, medical professionals or anyone who is interested … all are welcome and encouraged to join the HSP Community and its support group the HSP Research Foundation.

If you live in Australia and use this website, then please join us and become a member of the HSP community. You are also welcome to join if you live outside Australia, especially if you don’t have an HSP support group in your country. Join the HSP Community form (Word document; 92KB) Fill out the form on your computer, save it, and email it to us as an attachment. Joining is absolutely free and will not cost you a cent.

Advantages in joining

HSP is a rare disease and, in a big country like Australia, distance is a challenge in getting together. The main way to get and stay connected with HSP issues, and to participate in the HSP community, is through this website – the hub of the community. Keep up to date with the latest HSP research, information and news.

What you’ll find on the website

As well as quarterly updates on research progress to find an effective treatment in the News section, there is also regular news about the HSP community and the people in it, both from Australia and around the world. Articles on all aspects of ‘Living with HSP‘ number in the hundreds and are located in a separate section. The homepage is a great place to see what’s available on the website. Have a browse around!

Find what you want using ‘Search’

The website is also a library, housing thousands of searchable articles. Every page on the website has a ‘Search’ box at the top where you can just type in a keyword or phrase and all relevant articles on that topic will be listed for you. This easy-to-use feature will help you quickly find what you are looking for … and if not, pop us an email with your question and someone knowledgeable will personally answer your inquiry.

Members get important information by email

Unless you receive communications from us, you may well miss out on important information, for example about clinical trials or a social gathering near you. If you are not a member of the community, we have no way of communicating with you and letting you know.

Community Facebook page

Whilst we have our own Facebook page that we know is popular with many people, we encourage Facebook users who have not joined the community to also become community members, because so much information can’t be organised and presented via social media.

Everyone is encouraged to get involved and contribute to building a stronger community and Foundation. With only around 1,800 HSPers total in Australia, we need as many as possible to come together to make a strong and vibrant community with involvement and ownership. Together we can achieve much that we cannot as individuals.

How to join

Complete the Join the HSP Community form (Word document; 92KB).  You can either email or post it to us.


Fill it out on your computer, save it, and email it to us as an attachment.


Postal mail

Print out, complete and mail the form to:

HSP Research Foundation
P.O. Box 4064

Give to help fund HSP research

Support the Foundation’s ongoing efforts to fund research to find an effective treatment for HSP. Click on the Give button here or on the home page. Gifts of $2 or more are tax-deductible. You will be emailed a receipt.