Saturday, 7 May 2016

Re (act) community

April was a busy month, not only did I get the write-up done for the Drug Re-purposing conference, I also found out about more HSP communities, which I describe one of here, the Re(Act) Community:

This community aims connect researchers and ideas through cooperation and collaboration and promoting scientific projects through crowdfunding. They aim to be a game changer, spreading the voice about the urgency of investing in rare and orphan disease research. They believe that everyone can contribute to support scientific research and the community is open to researchers and to interested patients and other people. I saw this on twitter and spotted quickly that HSP is one of the rare diseases included.

I signed up and became the second follower of HSP. The site needed 15 followers in order to "unlock" HSP, so with a bit of twitter, Facebook and LinkedIn action I found enough interested people to unlock HSP - and thanks to all those who signed up!

Now that HSP is unlocked interested researchers can submit their proposals, and we can test the crowd funding side of the site. 

Readers are welcome to join in and support, as a patient or just as a follower. You will need to:
  • Register with the site
  • Go to HSP
  • Support/follow it
There is no commitment from you to do anything! You can choose to get notifications or not from the site.

If there are any researchers reading, you are also welcome to join in. Researchers are able to submit projects, which are screened by the sites Scientific Advisory Board.

On the crowd funding side of things the website seems only to have one project up and running at the moment, so it is in its early days. People can donate money in if they wish (the site takes 10% of donations to cover costs), and people can donate money to HSP specific projects if they wish.

I note that not only is the umbrella HSP term there, each of the SPG variants is listed separately. This comes because the site gets its list of rare diseases from a database which includes both the umbrella term and the specific SPG variants. I decided to also follow some of the SPG variants, other similar conditions as HSP (including ALS, PLS, CMT, Friedrich's Ataxia) and rare conditions of others I know (including MD, Turners Syndrome, Ehlers Danloss), and some of the more common hearing ones (including Meniere Disease, Alport Syndrome, Vestibular schwannoma).

You can follow the site here:
The site is set up and run by:

In summary, I was very pleased to be able to get enough people interested in this in order to unlock HSP, and in fact that is now the condition in 4th place, follower wise, on the site, whereas at the beginning of April there was, like many other diseases, just one follower. I'm pleased to have gotten another potential research channel unlocked, but actually getting researchers to get involved might be a bit more of a challenge, though!

1 comment:

  1. Quick note - I'm now also following the newly-added MS on the Re(Act) site, because (a) its a common mis-diagnosis for HSP, and (b) because one of my friends has it.