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With more than 30 million Americans – or one person in 10 nationwide – affected by a rare disease,1 Lundbeck recognizes the tremendous need for scientific research and support for affected individuals and families. Currently there are nearly 7,000 rare diseases, but fewer than 500 approved treatments.2
Raise Your Hand is Lundbeck’s web-based awareness initiative that generates support for people with rare diseases during the month of February. The campaign was born of a partnership with the National Organization for Rare Disorders (NORD), the U.S. sponsor of Rare Disease Day, held annually on the last day of February.
The campaign invites individuals to visit www.rarediseaseday.us and click on the “Raise Your Hand” icon during the month of February. Each unique click triggers Lundbeck to make a $1 donation to NORD’s research grant fund (up to a maximum donation of $10,000).
In 2014, Lundbeck’s donation to NORD’s research fund helped initiate a study of Primary Orthostatic Tremor. Individuals who are affected by this rare movement disorder experience rapid tremor in their legs when standing, which can cause them to immediately attempt to sit or walk due to a fear of falling.3
In past years, Lundbeck’s donation helped initiate studies of five rare disorders:
- The 2013 donation supported two research projects for Dubowitz syndrome, a rare childhood disorder for which less than 200 cases have been documented in literature.4 This autosomal recessive disorder is characterized by microcephaly, short stature, abnormal faces, and mild to severe mental retardation.4 The donation also supported 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.5
- The 2012 donation supported a study of Primary Immune Thrombocytopenia (ITP) in adults, a bleeding disorder affecting an estimated 31,000 – 74,000 people in the U.S.6 Primary ITP is an autoimmune disorder characterized by a low platelet count and increased risk of mucocutaneous bleeding.6
- Funds from the 2011 donation support a study of systemic sclerosis, a rare autoimmune disorder affecting an estimated 49,000 people in the U.S.6 This disease causes damage to the skin, but also involves the tissues beneath, blood vessels, and major organs such as the intestines, lungs, heart, and kidneys.7
- The 2010 donation supported a study for Stiff-Person Syndrome (SPS), a rare, acquired neurological disorder8 believed to affect fewer than one in 1 million people.9
Lundbeck employees support Rare Disease Day 2011 by raising their hands in the office.
- About Rare Disease Day. Rare Disease Day US. http://rarediseaseday.us/about/ Last accessed 1/23/13
- Rare Disease Day Fact Sheet. http://rarediseaseday.us/wp-content/uploads/2011/11/NORD-Rare-Disease-Day-Fact-Sheet-FINAL-2-16-2015.pdf Last accessed 7/2/15
- Primary Orthostatic Tremor
http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/1133/viewAbstract. Last accessed 1/9/15.
- 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.
- Primary Lateral Sclerosis. https://rarediseases.org/rare-disease-information/rare-diseases/byID/645/viewAbstract. Last accessed 1/3/2014.
- Swapna Thota, MD, Gaurav Kistangari, MD. Immune Thrombocytopenia in Adults: An update. Cleveland Clinic Journal of Medicine. September 2012; 79(9); 641-650.
- Systemic sclerosis. http://www.niams.nih.gov/Health_Info/Scleroderma/default.asp#3 Last accessed 1/23/13
- Stiff-person syndrome. http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Stiff%20Person%20Syndrome Last accessed 1/23/13
- Stiff-person syndrome. http://www.hopkinsmedicine.org/neurology_neurosurgery/conditions_main/old/stiff_person_syndrome.html Last accessed 1/23/13.