Aust. HSP community growing

Posted - August 2010 in HSPRF News

Strength in numbers

There are now around 300 members of the HSP community and the Foundation, up from around the 200 mark last year. This is a wonderful and welcome increase as the rarity of HSP means that any strength we do have is in numbers … the more we have, the stronger we are. The larger the community, the louder the voice possible in advocating for HSPers and their interests. 267 people in the community have HSP or are relatives, carers or friends of someone with HSP. The other 30 or so community members are medical professionals with whom we have a close association.

Neighbours

Our newest community member is our first international member, Baswara from Indonesia. In the past we have helped an HSPer from South Africa with genetic counselling and family planning, responded to requests for information from India and Bengal, and have built significant relationships with patient support groups in the US, the UK and Europe. We welcome the opportunity to include in our community and support HSPers from neighbouring countries in the Asia-Pacific region who do not have an HSP group like ours. It is worth remembering that any advances and breakthroughs in research towards a cure or in mobility management for HSPers is something that every HSPer on the planet can potentially benefit from.

Long way to go

Based on the most reliable prevalence data for HSP that we have from research, it is predicted that there are some 1,500 HSPers in Australia, so while the increase in our numbers is excellent, we can count only about 20% of our potential community at this stage, so we have a long way to go. Each of us needs to do what we can to encourage others to join the community.

Advantages

An important advantage of higher numbers is the potential to raise more funds for research, not only through direct support from a larger community, but also in the multiplier effect as each and every one of us draws upon the circle of people in our daily lives for support, and this is something we should all make a priority.

Yet another important advantage with a larger community is the increased potential to get together face-to-face, for example using the social networking facility publicised on the website. Most HSPers report  significant benefits from meeting and interacting with others in the community. Larger numbers make it much more feasible to run Workshops. This year the Foundation Workshop will be in Brisbane, the first time it will be held there. The more people in the community, the more news and information will be available on the website, and now that it is possible to make comments on each story and article on the website, the easier it will be to feel connected and feel like each of us belongs.

It is your website … it is your community … embrace it, help make it strong and help make it grow!

Comments on this story

  1. diana posted at 1:09 pm on 24 February 2011Reply

    Has the committee thought about making people aware of HSP, and what it actually is on free TV?
    I saw an ad on a Hereditary Disease (sorry forgot the name) but I had never heard of it.
    May be an idea to look into TVS free advertising.
    Like to hear your views.
    Regards Diana. 😕

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