Restless Legs Syndrome
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WED Foundation reverts to name RLS Foundation

In 2013, the RLS Foundation in the United States changed its name to the Willis-Ekbom Disease (WED) Foundation, to reflect a new medical name which was being applied to RLS.

We in the UK were uneasy about adopting this new name and therefore carried out a postal vote, asking our UK members for their thoughts. An overwhelming majority favoured retaining the term RLS rather than adopting the term WED, so we committed to retaining our existing name RLS-UK and respecting our members' views.

The Willis-Ekbom Disease Foundation has announced that it has now reverted to the title 'RLS Foundation'.

4 Replies

And thank goodness we kept the name RLS-UK and didnt follow suit to change like the RLS Foundation did and now has changed back again. It would have been a costly mistake if the RLS-UK had to change all the leaflets, paper heading etc etc, then because the RLS Foundation has decided to change back again, everything would cost to put things back to normal. What a huge waste of money that would have been.


Yes, common sense has prevailed, at least in one corner of the world. We in the Parkinson's world have not been so lucky. We changed from Parkinson's Disease Society to Parkinson's UK. With a small leap of imagination it is possible to add an e to shorten Parkinson's UK to PUKE. Anyway our name change reportedly cost £46,000. Scandalous I call it.



1 like

Been doing my HAPPY DANCE ever since I saw them announce it! This foundation, the UK one, held it's ground and did not change to the "new" name!. Think of all the money wasted changing from RLS to WED and now back again to RLS, which is what it should have STAYED!! SMARTER heads have prevailed. The poll done here clearly showed the UKer's wanted to keep RLS. The poll I did with over 4,000 people, was about the same size that the US foundation had done. My poll showed 90% against the "new name" WED as opposed to THEIRS that they said was 90% FOR the new name. However, they did NOT listen to their own members on any point. So, we were stuck using a new name that was never legal. The Internal Revenue Service always called them the RLS foundation, because of many reasons, they had to give up the fight to use WED. Google WED, see what you get. A wedding magazine (copyrighted name WED) wedding planners, all kinds of stuff come up but not one thing, after 3 YEARS of trying to shove the new name down our throats, about RLS pops up now any WED references to the OLD, never legal name. I will never stop doing the happy dance over this one! We win! ;)


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