Join the HSP community

Posted - December 2014 in HSPRF News

Advantages in becoming a member

 

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We welcome new members of the community!

People with HSP, family members, friends and caregivers, 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 (Word document; 130KB) Fill out the form on your computer, save it, and email it to us as an attachment.

 

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There are many advantages in joining and fairly soon there will be more. Unless you receive communications from us, you will 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. It does not cost a cent.

 

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As HSP is a rare disease, and we live in a big country, distance is a challenge in getting people together. So the main way to get and stay connected with HSP issues and participate in the HSP community is the website – the hub of the community – to keep up to date with all the latest HSP research, and news and information about the Foundation, the community and the people in it. You can email us to ask any questions you may have. You will always receive a personal response from a real person. You will receive an email every quarter advising of the latest website update and news relating to the community & the Foundation.

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As a small all-volunteer Foundation, and a small HSP community, our strength lies in our numbers. We are only as strong as our community and it is the community who provide the funding to help find an effective treatment for HSP.

 

Please Join! Fill out the form Join the HSP Community (Word document; 130KB) … it is absolutely free to become a community member.

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