The Orphans Dream Foundation, Inc. is a 501 (c) (3) Non Profit Organization that was founded to support research in Orphan Diseases. The Orphans Dream Foundation, Inc., founded in November 2007.
Orphan Diseases are diseases that have no sponsors to sustain meaningful research. The dream of an ‘orphan disease’ is similar to that of an orphaned child. The happiness of someone afflicted with an ‘orphan disease’ will most likely be achieved through science.
An ‘Orphan Disease’ is a rare disease. In the EU, an ‘Orphan Disease is considered a disease that afflicts less than 1 in 2,000 people, or .0005% of the population. In the US an ‘Orphan Disease’ is a disease that afflicts less than 200,000 people or 1 in 1,500 people or .00066% of the population.
Pharmaceutical companies, foundations and public research grants are the main supporters of research for disease. Pharmaceutical companies are profit driven. A foundation’s strength is directly affected by the number of its members. Governments invest in diseases that pose the greatest risk to its population. The greatest risk is largely determined by the number of patients. This means that when the population of patients with an Orphan Disease is small, it is incredibly difficult to find resources for research.
What this means to the 30,000,000 patients in the EU or 18,000,000 people in the US who are afflicted by a rare disease is that it is unlikely that there will be large energies sustained to support the research for their eventual cure. The diseases are orphaned.
Some well known ‘Orphan Diseases’ are, Juvenile Arthritis, Burkitt Lymphoma, Chagas Disease, Crohn Disease, Encephalitis, Hodgkins Disease, Huntington Disease, Pulmonary Fibrosis, Sickle Cell Anemia, and Thalassemia.
There are more than 6,000 recognized Orphan Diseases in the United States. Treatments for only 260 Orphan Diseases have been approved by the FDA. Currently, The Orphans Dream Foundation, Inc. is sponsoring Clinical Trials in Humans for Thalassemia by years end, 2008, with a focus on Sickle Cell Anemia close behind that. |