WED Foundation and XenoPort Announce Preliminary Results from the “Patient Odyssey” Survey

  WED Foundation and XenoPort Announce Preliminary Results from the “Patient
  Odyssey” Survey

 -- Survey Reveals Significant Long-Term Challenges in RLS/WED Management --

Business Wire

ROCHESTER, Minn. & SANTA CLARA, Calif. -- November 13, 2013

The Willis-Ekbom Disease (WED) Foundation and XenoPort, Inc. (Nasdaq: XNPT)
announced today the preliminary results from the “Patient Odyssey” survey,
which reveal the challenges experienced by patients with Restless Legs
Syndrome/Willis-Ekbom Disease (RLS/WED). The survey kicked off during this
year’s National RLS/WED Awareness Week, and examined treatment, lifestyle and
emotional burden on both RLS/WED patients and their spouses/partners. Results
regarding treatment burden are now available on the WED Foundation website
(; results regarding lifestyle and emotional burden,
including spouse/partner responses, will be released in 2014.

“This initiative has provided important insights regarding management of
RLS/WED, including the fact that patients continue to struggle with
identifying treatments that adequately control their symptoms in the long
term,” said Georgianna Bell, executive director of the Willis-Ekbom Disease
Foundation. “Most RLS/WED patients have the disease for life, so understanding
how to navigate disease management considerations in partnership with loved
ones and physicians is important. The results of this survey will allow us to
develop new resources to facilitate improved outcomes for patients, as well as
serve as an important educational tool that helps the greater public
understand the serious burden of this disease.”

Participants of the survey included 1,709 RLS/WED patients who are members of
the WED Foundation and consisted of 1,194 women and 515 men. The results of
the survey showed:

  *Almost three in four (73%) of patients reported that they experience
    symptoms daily
  *When asked about their current medication, only 6% of patients believed
    that their RLS/WED symptoms are completely controlled by their current
  *Sixty-eight percent of patients said they “strongly agreed” that there is
    a need for greater physician knowledge and understanding of RLS/WED
  *Forty-two percent of patients “agreed” that their healthcare provider does
    not understand their disease
  *Ninety-three percent of patients “agreed” that they wished more effective
    medications were available to treat RLS/WED

“The Patient Odyssey survey results mirror what I and many of my colleagues
are already seeing in our practices – that patients can struggle for many
years to identify the cause of their symptoms and to arrive at an appropriate
disease management plan,” said Dr. Philip Becker, President, Sleep Medicine
Associates of Texas and longtime member of the Medical Advisory Board of the
WED Foundation. “This initiative reinforces the need to continue to educate
the RLS/WED community and the physicians who treat them. Those with RLS/WED
deserve knowledgeable physicians who understand the disease. A proper
diagnosis and sustained treatment of RLS/WED can offer benefit to those who
suffer through restless days and restless nights.”

The survey was conducted by the WED Foundation and made possible through a
corporate sponsorship from XenoPort, Inc. It was distributed to members of the
WED Foundation and their spouses/partners via mail and was available online
throughout the month of October.

About Restless Legs Syndrome/Willis-Ekbom Disease

RLS/WED affects people of all ages, genders and races. People who have the
disease have to move their legs or arms to relieve uncomfortable, sometimes
painful sensations. These sensations tend to get worse when the person is at
rest, like when sitting or lying down, watching television or taking a long
car ride. Because symptoms usually intensify in the evening, they often
interfere with the ability to sleep.

While the causes of RLS/WED are not completely understood, several genes have
been identified with an increased risk of RLS/WED. Other factors thought to
contribute to the disease include iron metabolism and, possibly, abnormalities
in the neurotransmitters dopamine and glutamate.

While there is not yet a cure for RLS/WED, treatment is available.

About the WED Foundation

The WED Foundation is dedicated to improving the lives of men, women and
children who live with Willis-Ekbom disease. Founded in 1992 as the Restless
Legs Syndrome Foundation, the organization’s goals are to increase awareness,
improve treatments, and through research, find a cure. The WED Foundation
serves healthcare providers, researchers, over 4,000 members, and millions of
individuals in the United States and Canada. The WED Foundation has awarded
$1.4 million to fund medical research on RLS/WED causes and treatments. For
more information, please visit

About XenoPort

XenoPort, Inc. is a biopharmaceutical company focused on developing and
commercializing a portfolio of internally discovered product candidates for
the potential treatment of neurological disorders.



The WED Foundation
Georgianna Bell, 507-287-6465
XenoPort, Inc.
Jackie Cossmon, 408-616-7220
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