Restless Legs Syndrome (RLS) Foundation name change – May 2015 FAQs
Friday, May 01, 2015Restless Legs Syndrome (RLS) Foundation name change – May 2015 Frequently asked questions 1. What is changing? Effective M...
Friday, May 01, 2015
Restless Legs
Syndrome (RLS) Foundation name change – May 2015
Frequently
asked questions
1.
What is changing?
Effective May 1, 2015, we are reverting to our original name:
Restless Legs Syndrome (RLS) Foundation. Our website domain will return to www.rls.org.
Our social media, publications and correspondence will also reflect the original
name going forward.
2.
Why is the Foundation making this change?
Feedback from members,
healthcare providers and scientists reveals that restless legs syndrome is their preferred term for the disease.
Despite consensus achieved two years ago for adopting the term Willis-Ekbom disease to avoid the
misleading words legs and syndrome and to help destigmatize the
disease, our stakeholders largely continue to use restless legs syndrome. Using the more familiar, widely recognized
term restless legs syndrome will also
best support the Foundation’s marketing, public relations and fundraising
efforts. Overall, the term restless legs
syndrome works best for pursuing our mission to improve the lives of
individuals who have RLS.
3.
What is not changing?
The RLS Foundation is committed to improving the lives of the
millions of men, women and children who live with RLS. Our dedication to this
mission will not change. Through initiatives like our Quality Care Center
Program, Research Grant Program, and educational offerings, we will continue to
work tirelessly to advance RLS awareness, treatment and research.
4.
What steps did the Foundation take to make this
decision?
In early 2015, the Foundation’s Board of Directors began
discussing the possibility of reverting to the original name, in response to
significant feedback from members, healthcare providers and researchers. We
also received input from experts in business, marketing and public relations,
who affirmed that the term restless legs
syndrome will best support our activities in fundraising, growing and
cultivating our membership, and increasing our media profile. After careful
consideration of how to best serve our members, the Board voted unanimously in
March to revert to our original name, Restless
Legs Syndrome (RLS) Foundation.
5.
How will my doctor know about the name change?
We will be communicating the name change broadly through a
letter to individual healthcare providers who are listed in the Foundation’s
provider directory, targeted communications to support group leaders and
members, and a press release and announcements on our social media channels.
Information about the name change will also be posted on our website at www.rls.org.
6.
Will the term restless legs syndrome be used universally once again?
Over the past two years, the term restless legs syndrome has continued to be used alongside the term Willis-Ekbom disease by patients,
researchers and healthcare providers. Restless
legs syndrome will continue to be used as a single term or in “dual use” going
forward.
7.
If I prefer the name Willis-Ekbom disease, can I continue to use it?
The
choice is yours to make on the term you prefer. Whichever name you use, the RLS
Foundation will continue to work on your behalf to advocate, educate and search for a cure.
8.
Will this change how and where I make donations
to the Foundation? If I have a recurring gift set up, will anything be
different?
You may continue to make gifts as you do now, whether
through our website at www.rls.org or by mail. Going forward, please make
checks out to the RLS Foundation. If you make a recurring gift, your donations
will continue to be withdrawn as previously scheduled. Thank you for your
support!
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