DEERFIELD, Ill.--(http://rarediseaseday.us/), Lundbeck will make an unrestricted donation to NORD’s research grant fund. This will support one of NORD’s grant funds for which there is no current or recent funding.)--Today, Lundbeck announced its fourth 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 the National Organization for Rare Disorders (NORD) Rare Disease Day website (
“While we’ve seen important advances in research, much work remains to push forward innovative therapies for the nearly 1 in 10 Americans living with a rare disease”
“This year, Rare Disease Day falls during the celebration of the 30th anniversary of the Orphan Drug Act and the founding of NORD,“ said Peter L. Saltonstall, NORD president and CEO. “Now heading into our fourth year of the Raise Your Hand campaign with Lundbeck, this partnership is a reflection of our enduring commitment to accelerate the research and development of safe, effective treatments for rare diseases. Donations from Lundbeck have helped initiate three studies for severe and rare disorders. Our hope is that each of these studies will help lay the groundwork for continued research with funding from government or commercial sources that might ultimately bring therapies or other advances for patients.”
There are nearly 7,000 rare diseases and fewer than 500 approved treatments.1 However, as scientists increase their understanding of the underlying causes of many diseases, new avenues are opening for developing targeted treatments that work more effectively. According to PhRMA’s recent review of the biopharmaceutical pipeline, nearly three times as many drugs for rare diseases and conditions are in the pipeline compared to a decade ago.2
“While we’ve seen important advances in research, much work remains to push forward innovative therapies for the nearly 1 in 10 Americans living with a rare disease,”3 said Staffan Schüberg, president of Lundbeck in the U.S. “Having brought three therapies for rare central nervous system (CNS) disorders to market in the past five years, Lundbeck has an appreciation for the challenges faced by the rare disease community. We’re honored to celebrate these historical milestones with NORD and continue our partnership to support rare disease research.”
Lundbeck’s donations to NORD’s research fund have helped initiate studies of three rare disorders, all of which currently have no approved treatment options:
- The 2012 donation will support a study of Primary Immune Thrombocytopenia (ITP) in adults, a bleeding disorder affecting an estimated 31,000 – 74,000 people in the U.S.4 Primary ITP is an autoimmune disorder characterized by a low platelet count and increased risk of mucocutaneous bleeding.4 Led by Nicola Cooper, MD, Imperial College, London, UK, the goal of the study is to determine potential additional anti-platelet antibodies that will lead to more accurate diagnosis.
- 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.5 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.5 Led by Silvia Laura Bosello, MD, PhD, Catholic University of Sacred Heart, Complesso Integrato Columbus, Rome, the study is aimed at improving the identification of abnormal B-cells and administering medications that are known to positively affect the production of B-cells.
- The 2010 donation supported a study Stiff-Person Syndrome (SPS), a rare, acquired neurological disorder6 believed to affect fewer than one in 1 million people.7 Led by Eric Lancaster, MD, University of Pennsylvania, the study was completed in September of 2012, and there are plans to continue efforts to identify other novel antibodies associated with SPS, and determining how the various antibodies may cause disease.
For information on other rare disease studies being funded by NORD’s general research fund, visit http://www.rarediseases.org/medical-professionals/research-grants/recipients.
About Rare Diseases
There are approximately 7,000 rare diseases or conditions affecting an estimated 30 million Americans,3 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.3 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.3
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.3 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.8 To learn more about Rare Disease Day 2013, 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 central nervous system (CNS) disorders, including rare diseases. Currently, the company has numerous CNS 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.
H. Lundbeck A/S (LUN.CO, LUN DC, HLUKY) is an international pharmaceutical company committed to improving the quality of life for people suffering from psychiatric and neurological disorders. For this purpose, Lundbeck is engaged in the research, development, production, marketing and sale of pharmaceuticals across the world. The company's products are targeted at disorders such as depression and anxiety, schizophrenia, epilepsy, Huntington's, Alzheimer's and Parkinson's diseases. Lundbeck took first place in a new global survey released in early 2013, in which 600 patient groups around the world evaluated the ability of 29 pharmaceutical companies to meet patient expectations.
Lundbeck was founded in 1915 by Hans Lundbeck in Copenhagen, Denmark. Today Lundbeck employs approximately 6,000 people worldwide. Lundbeck is one of the world's leading pharmaceutical companies working with brain disorders. In 2011, the company's revenue was DKK 16.0 billion (approximately EUR 2.2 billion or USD 3.0 billion). For more information, please visit www.lundbeck.com.
- NORD’s 2012 Report to the Communities. http://www.rarediseases.org/docs/NORD_Overview_Brochure.pdf 2012;8. Last accessed 1/23/13
- The Biopharmaceutical Pipeline: Evolving Science, Hope for Patients. http://phrma.org/sites/default/files/2435/phrmapipelinereportfinal11713.pdf Last accessed 1/23/13
- About Rare Disease Day. Rare Disease Day US. http://rarediseaseday.us/about/ Last accessed 1/23/13
- 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.
- History of Rare Disease Day. Rare Disease Day US. http://rarediseaseday.us/about/history/ Last accessed 1/23/13