Join the HSP community

We welcome new members of the community!

HSPers get 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 and you don’t have an HSP support group in your country. Join the HSP Community form (Word document; 130KB) 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.




fun run & fundraising

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.


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As well as quarterly updates on research progress to find an effective treatment, articles on all aspects of living and managing with HSP number in the hundreds. There is also regular news about the HSP community and the people in it.

The website is also a library, housing thousands of searchable articles in an archive. Every page on the website has a ‘Search’ box where you can just type in a keyword or phrase and all relevant articles on that topic will be listed for you. Use this quality resource

Unless you receive communications from us, you may well miss out on important information about clinical trials that are currently in the planning stages. We will let people know when and where they can sign up as volunteers for clinical trials. If you are not a member of the community, we have no way of communicating with you and letting you know.

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 do so by completing the Joining Form.

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.



Original HSP Research team: Yongjun Fan, Alan Mackay-Sim, Gautam Wali

How to join

Complete the Join the HSP Community form (Word document; 130KB).  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 Clinical Trials

If you would also like to support the Foundation’s ongoing efforts to fund important research, click on the orange Give button on the home page. Gifts of $2 or more are tax-deductible and you will get a receipt.