Raise Your Hand to Support Rare Disease Research and Education
Lundbeck and NORD kick off 5^thannual fundraiser in support of Rare Disease
Day on February 28
DEERFIELD, Ill. -- February 3, 2014
Today, Lundbeck and the National Organization for Rare Disorders (NORD)
announced the fifth annual Raise Your Hand to Fight Rare Diseases campaign in
support of Rare Disease Day, a worldwide observance on February 28 to increase
awareness of rare diseases. When an individual clicks the Raise Your Hand icon
posted on NORD’s Rare Disease Day website (http://rarediseaseday.us/),
Lundbeck will make an unrestricted donation to NORD’s research grant fund.
Since the launch of the campaign in 2010, more than 40,000 clicks have been
generated in support of rare disease research. In recognition of the fifth
anniversary of the campaign, Lundbeck is calling on the public to help reach a
total of 50,000 clicks.
“This year, the theme of Rare Disease Day is Join Together for Better Care,”
said Peter L. Saltonstall, NORD president and CEO. “We are celebrating all of
the individuals and organizations who come together to support the rare
disease community, as well as the advancements in medical research and policy
developments that are building hope in this community. Lundbeck’s
contributions over the past four years have helped NORD support promising
research to improve the lives of those affected by rare diseases.”
Nearly 1 in 10 Americans are living with rare diseases.^1 Through independent
research and collaboration, Lundbeck is committed to bringing innovative
therapies to the rare disease community as part of the company’s larger focus
on brain disorders. In addition to making several therapies for rare diseases
available to people in the U.S., Lundbeck has an orphan epilepsy medication in
late-stage development and earlier stage research programs evaluating
compounds that could address other orphan brain disorders. In addition,
through the Huntington’s disease Research Initiative, Lundbeck collaborated
with the University of Massachusetts to develop therapies for the management
of Huntington’s disease, a challenging rare disease that affects about 30,000
“Lundbeck’s work in the rare disease community has given us a deep
understanding of those who confront the challenges of these diseases every
day, often without the resources and support afforded to more common
diseases,” said Staffan Schüberg, president of Lundbeck in the U.S. “On Rare
Disease Day we are reminded that rare diseases have a significant impact on
not only the individual patients, but their families and society as a whole.”
Last year, Lundbeck’s donation to NORD’s research fund helped initiate studies
of two rare disorders:
*Two research projects for Dubowitz syndrome, a rare childhood disorder for
which less than 200 cases have been documented in literature.^3 This
autosomal recessive disorder is characterized by microcephaly, short
stature, abnormal faces, and mild to severe mental retardation.^3 The
Lundbeck grant will be shared by two researchers: Zhiyuan Shen, MD, PhD
Department of Radiation Oncology Rutgers Cancer Institute of New Jersey
for the identification of the genetic defects in Dubowitz Syndrome and A.
Micheil Innes, MD, FRCPC Department of Medical Genetics Faculty of
Medicine, University of Calgary, Canada to establish a framework to
facilitate phenotypic delineation and gene identification in Dubowitz
*One research project for Primary Lateral Sclerosis (PLS), a rare,
neuromuscular disorder that is characterized by painless but progressive
weakness and stiffness of the muscles and legs.^4 The Lundbeck grant was
awarded to Catherine Lomen-Hoerth, MD, Department of Neurology, University
of California, San Francisco, to study the efficacy of intrathecal
baclofen for spasticity of Primary Lateral Sclerosis.
For information on other rare disease studies being funded by NORD’s general
research fund, visit
About Rare Diseases
There are approximately 7,000 rare diseases or conditions affecting an
estimated 30 million Americans,^1 though the number of individuals confronting
any one of these disorders can be quite small. In the United States, rare
diseases, also referred to as "orphan conditions," are generally defined as
diseases that affect fewer than 200,000 Americans.^1 Compared to individuals
with more common disorders, those with rare diseases often face greater
challenges such as difficulty in finding medical experts, delay in receiving
an accurate diagnosis, and access to few, if any, treatment options.^1
About Rare Disease Day
Rare Disease Day is an annual event observed worldwide on the last day of
February each year. The purpose of the day is to raise awareness of rare
diseases as a public health issue and bring together patients and families
with rare diseases to discuss the need for greater awareness, more research,
and better access to diagnosis and treatment.^1 Rare Disease Day was first
launched in 2008 in Europe by the European Rare Disease Organization,
EURORDIS, a sister organization to NORD. In 2009, NORD partnered with
EURORDIS, becoming the official sponsor of Rare Disease Day in the US.^5 To
learn more about Rare Disease Day 2014, please visit www.rarediseaseday.us, or
visit Facebook and become a fan of Rare Disease Day US.
The National Organization for Rare Disorders (NORD) represents the nearly 30
million Americans affected by rare diseases. Founded in 1983, NORD is a
non-profit organization providing programs of education, advocacy, research,
and patient services. NORD administers patient assistance programs to help
uninsured or under-insured individuals obtain medications they could not
otherwise afford. It also provides information to patients and their families,
research grants and fellowships, and advocacy on important public policy
issues. Follow NORD at www.rarediseases.org and on Twitter at @RareDiseases.
About Lundbeck in the U.S.
Lundbeck in the U.S., headquartered in Deerfield, Illinois, is a wholly-owned
subsidiary of H. Lundbeck A/S in Denmark. Lundbeck is committed to
accelerating our work in brain disorders, including rare diseases. Currently,
the company has numerous compounds in development, including several in
late-stage clinical trials. Lundbeck is a member of the National Organization
for Rare Disorders Corporate Council. For more information, please visit
www.lundbeckus.com or follow us on Twitter at @LundbeckUS.
About H. Lundbeck A/S
H. Lundbeck A/S (LUN.CO, LUN DC, HLUYY) is a global pharmaceutical company
specialized in brain diseases. For more than 50 years, we have been at the
forefront of research within neuroscience. Our development and distribution of
pioneering treatments continues to make a difference to people living with
brain diseases. Our key areas of focus are alcohol dependence, Alzheimer's
disease, depression/anxiety, epilepsy, Huntington's disease, Parkinson's
disease, schizophrenia and stroke.
Our 5,800 employees in 57 countries are engaged in the entire value chain
throughout research, development, production, marketing and sales, and are
committed to improving the quality of life of people living with brain
diseases. Our pipeline consists of several late-stage development programs and
our products are available in more 100 countries. We have research centers in
China, Denmark and the United States, and production facilities in China,
Denmark, France, Italy and Mexico. Lundbeck generated revenue of approximately
DKK 15 billion in 2012 (EUR 2 billion; USD 2.6 billion).
Lundbeck's shares are listed on the stock exchange in Copenhagen under the
symbol "LUN". Lundbeck has a sponsored Level 1 ADR program listed in the US
(OTC) under the symbol "HLUYY". For additional information, we encourage you
to visit our corporate site www.lundbeck.com.
1. About Rare Disease Day. Rare Disease Day US.
http://rarediseaseday.us/about/ Last accessed 1/3/14
2. Fast Facts About HD. HDSA.org.
http://www.hdsa.org/images/content/1/3/13699.pdf. Last accessed 10/1/13.
3. Rebekah S. Huber, Daniel Houlihan, Kevin Filter. Dubowitz Syndrome: A
Review and Implications for Cognitive, Behavioral, and Psychological Features.
Journal of Clinical Medicine Research. August 2011; 3(4): 147-155.
4. Primary Lateral Sclerosis.
Last accessed 1/3/2014.
5. History of Rare Disease Day. Rare Disease Day US.
http://rarediseaseday.us/about/history/ Last accessed 1/3/14
Rachel Vann, (847) 282-1139
Press spacebar to pause and continue. Press esc to stop.