Our best chance ever to show Governments across Europe why they MUST help diagnose and treat RLS

Our best chance ever to show Governments across Europe why they MUST help diagnose and treat RLS

One of the greatest challenges facing people living with Restless Legs Syndrome (RLS) is poor diagnosis. A 2013 survey of 4,107 people living with RLS found that the average time from onset of the disease to correct diagnosis was 13.6 years, with many patients having to wait up to 20 years and visit numerous doctors before being correctly diagnosed.

The European Brain Council has started a major new project entitled: The Value of Treatment/The Cost of Non-Treatment. RLS was selected as one of the seven brain disorders for the study after the submission of an application by the European Alliance for Restless Legs Syndrome with other conditions selected including Multiple Sclerosis, Schizophrenia, Epilepsy and Parkinson's Disease. For RLS to be included with these other well-known conditions is itself a significant step but now we need to progress the RLS study.

To do so, EARLS needs to raise £15,000 and we are asking our supporters to help. This is the best opportunity we have ever had to raise awareness of RLS but we need your help to do it.

You can donate via:


If you are in the UK, you can also donate via text:

If you you would like to help by text, simply text EARL00 (EARL, zero, zero) and the amount you would like to donate to 70070. There should be a space between the EARL00 and the amount you would like to donate.

For example, if you wanted to donate £10, you'd text:

'EARL00 £10' and send to the number 70070.

If the target is not met, this study is unlikely to go ahead so please help if you can.

Thank you!

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28 Replies

  • Fellow RLS sufferers, please help by donating what you can. This is the best opportunity we have ever had to raise awareness of RLS. It would be very disappointing if it did not go ahead due to lack of funding.

  • Kaarina, my donation by phone text has been sent back to me, and it says to send it to " just text giving by Vodafone " it sounds abit suspect. Please will you clarify, then I will give my donation. Thanks Jimeka

  • Hi Jimeka, I donated via the link the other day and had no problem but I understand that you are not the only one that is having some kind of problem when trying to donate via text.

    Would you be able to donate via the link instead? I know this works. :)


  • Thank you Kaarina, I think it has worked this time. I was putting O instead of zero,s. It's obviously sensitive. Have a good holiday Monday. Cheers Jimeka

  • Thank you for persevering, jimeka. I hope you have a good day too and that the weather is as pleasant as yesterday but at the moment it does not look like that will happen! ;)

    Take care,


  • Totally agree. if there is no funding the studies do not get done! EVER. So, this seems like a GOOD chance to be studied along with these other diseases. We need so many studies done, so this is a good start.

  • I just tried to donate via text but message has come back saying it is not a recognised code??? I will go via the link instead x

  • I got it to work by text,I hadn't left a space between EARL00 and the £ sign Have done it no. PLEASE  everyone know money is tight for lots of us but every little helps 70 %of RLS is Primary ( genetic ) so think of the next generation I  x

  • Well said Pippins. All of my 3 children have started with it, so it's a good investment. Keep smiling, Jimeka x

  • Hi Pippins, thank you. Yesterday afternoon, someone on the RLS FB page was having difficulty donating via text. Daragh  tried it and it does work  OK. The code is EARL00 (EARL, zero, zero) and the amount e.g. £5

    I think it must be easy to do something slightly incorrectly and then it will not work. ;)

  • done :) X

  • Thank you maesllans for supporting us by donating. :)


  • What a wonderful opportunity for RLS !! I donated by following the link and used PayPal to pay, it was pretty straightforward.

    Off topic sorry, hope you're getting over your op Pippin :)

  • :) Thank you booklover for supporting us by donating and yes it is a wonderful opportunity and it would be very disappointing if the study did not go ahead due to lack of funding.

  • Any idea how close we are to reaching the target yet? 

  • Gmc54, if you click on the link in the very first posting you will see how much has been donated.  33 people have donated.

    This does not tell you how much has been donated via text though. I do not know the answer to that.

  • Mine was by text, so hopefully a lot of others will have given the same way. I imagine we are still a long way from the target though. 

  • Hi Gmc54, unfortunately I imagine this is the case.

  • Have donated i just hope we reach the target it will help an awfull lot of sufferer,s

  • Hi Carol, thank you very much for donating. I hope we reach the target too. :)

  • Please, please come on folks - this must be worth supporting. There are 100s, 1000s of us out there suffering - if we all gave £10 I'm sure we'd reach the target.

  • Hi jumpingvalley, it is worth supporting and if RLS sufferers donated £2.00 each we would reach the target. ;)

  • Just donated ... Hope this goes ahead

  • Is this funding scheme still ongoing? The main message was posted five months ago. If it is, I'd like to donate.

  • Hi Pluto, you could try to donate on the link and see if the transaction goes through. :)

  • Managed it. But I see that only 800-odd pounds have been raised, and the target is 15 thousand. Have you contacted different branches in the US, Australia, etc. I know we've got an RLS group here in Norway, they can be contacted at post@rastlos.org.

  • Hi Pluto, you could email Daragh Bogan, email address chair@rls-uk.org with your suggestions. :)

  • Hi Karina,

    A year has past since this was posted, did it ever happen? If not, is there a new target date and amount?


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