RE(ACT) crowdfunding platform for rare diseases

general questions and discussions

Moderator: admin

RE(ACT) crowdfunding platform for rare diseases

Postby PoetFire » Thu Jul 31, 2014 11:30 pm

I have become aware of RE(ACT) which is a Swiss Charity founded by a a pediatrician. It is to act as a crowdfunding platform especially for rare diseases, so that researchers can put projects forward which are then judged by a scientific committee. If approved, they are then put on the website so that the public can donate. It has only started so only one project is currently approved

Each rare disease has a 'group'. They have a TMAU group. Each group needs 15 'followers' for the group to be 'open for business'. Currently the TMAU group has 8 followers .

I am aware of one researcher with a long interest in TMAU who has expressed an interest in the RE(ACT) platform. They have a pilot study proposal that may cost around £40,000 or less.

First the TMAU group needs to reach 15 followers
http://react-community.org/diseases/6827/patients

You can sign up here
http://react-community.org/users/sign_up
tick 'patient' and choose 'trimethylaminuria' in the dropdown list

There'a a forum thread about it on the rareconnect site
https://www.rareconnect.org/en/communit ... h-projects
PoetFire
 
Posts: 290
Joined: Fri Jan 15, 2010 10:23 am

Re: RE(ACT) crowdfunding platform for rare diseases

Postby malory » Sun Aug 03, 2014 8:20 am

Thanks for publicising this brilliant initiative. I've signed up, but I'm shocked to see that we still don't have 15 people - maybe some people are on holiday. There are loads of us out there who could benefit from this platform. MORE PEOPLE need to sign!
:)
malory
 
Posts: 197
Joined: Fri Nov 26, 2010 1:16 pm
Location: London -west

Re: RE(ACT) crowdfunding platform for rare diseases

Postby PoetFire » Sun Aug 03, 2014 12:55 pm

Up to 14 now. 1 more needed for the TMAU group to be 'open for research submittals'
http://react-community.org/diseases/6827/patients

sign up page >>>
tick 'patient' and from the dropdown list choose trimethylaminuria
http://react-community.org/users/sign_up

It's a great opportunity; both the REACT platform and the potential research project. And hopefully other researchers will be interested to submit research projects. Once a project is submitted it should take the committee 3-5 weeks to judge.

People must keep in mind that the initial project may not be approved as it is would be a 'pilot study' with no preliminary data. But if it is not approved then any money raised will go into the REACT TMAU group general fund for future projects.

1 more person needed to make the REACT TMAU group open
PoetFire
 
Posts: 290
Joined: Fri Jan 15, 2010 10:23 am

Re: RE(ACT) crowdfunding platform for rare diseases

Postby PoetFire » Sun Aug 03, 2014 9:02 pm

Some people may be having problems signing up to the REACT TMAU group

The sign-up process is not vewry clear and a bit of a hall of mirrors.

One way I can see can be a problem is :
The person is signed up to REACT but not to the TMAU group.

If you are signed up to REACT and go to the sign-up page it will say 'you are already a member'
http://react-community.org/users/sign_up

If that is the case then go to the TMAU page and click the 'follow' or 'support' button
REACT TMAU page : http://react-community.org/diseases/6827

Anyone having problems feel free to say. The site is new and a bit buggy with the logistics.
PoetFire
 
Posts: 290
Joined: Fri Jan 15, 2010 10:23 am

Re: RE(ACT) crowdfunding platform for rare diseases

Postby PoetFire » Mon Aug 04, 2014 1:18 pm

The RE(ACT) TMAU group has reached 15 followers and is 'open for research projects to be submitted'
http://react-community.org/diseases/6827

Thanks everyone

I will keep you updated. I am aware of one potential FMO3/TMAU research project but will need to see what can be said now. If the project is not approved by the RE(ACT) scientific committee it still means that other projects can be put forward by researchers.

Feel free to join the group. There seems to be trap-doors along the sign-up process but hopefully most can end up in the TMAU group. If you are signed up to RE(ACT) but not the TMAU group then look for a 'follow' or 'support' button.

RE(ACT) is part of the Blackswan Foundation
PoetFire
 
Posts: 290
Joined: Fri Jan 15, 2010 10:23 am


Return to general tmau topics

Who is online

Users browsing this forum: No registered users and 1 guest

cron