"With nearly 5 percent of the world's population - an estimated 350 million people - living with a rare condition, we understand the challenging diagnostic odyssey experienced by people with rare diseases", said Jim Chinitz, CEO Population Bio.
The networks allow leading specialists across Europe to work together to combat rare diseases, and to collaborate and share knowledge and research on rare conditions such as neuromuscular and auto-immune conditions. So while the term "rare disease" might suggest otherwise, there are around 350 million people out there living with one of these rare diseases.
In the United States, a disease is defined as rare if it affects fewer than 200,000 Americans at any given time. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.
There are still no known cures for most rare diseases, and the cost of treatment is extremely high.
Summit Therapeutics PLC (NASDAQ: SMMT LON:SUMM) has hailed the tenth annual Rare Disease Day, 28 February 2017.
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"Rare diseases are often chronic and life threatening and include rare conditions, such as childhood cancers, and some other well-known conditions including cystic fibrosis and DMD". The challenges pertaining to the diagnosis and treatment of rare diseases are manifold.
ISCR said out of the 7,000 known rare diseases today, a lot of them are "progressive, life-threatening, and chronically" debilitating conditions.
ISCR said research can lead to the identification of previously unknown diseases, can increase understanding of diseases, enable doctors to give a correct diagnosis, lead to the development of new innovative treatments and even reduce costs for healthcare systems and improve the quality of life of patients and their families.
In addition to the official public release of the documentary, Cambridge BioMarketing is celebrating Rare Disease Day with the #SupportTheSearch social media campaign to raise awareness for rare diseases and the need for research to find cures.