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Rare Diseases

Issues & Solutions

(Anushka Hauerstock for Direct Relief)

Quick Facts

An estimated 400 million people around the world are affected by a rare disease, according to the National Institutes of Health.

With approximately 10,000 known rare diseases, receiving an accurate diagnosis can be a long and challenging process.     

Although rare diseases are serious and can be life-threatening, only about 5 percent of identified rare diseases have a U.S. Food and Drug Administration-approved treatment, and access to therapies is often cost-prohibitive, according to the NIH.  

Through its partnerships with Amgen, Biogen, and Takeda, Direct Relief supports patients with Fabry Disease, Gaucher Disease, Mucopolysaccharidosis type II (MPS II), pediatric acute lymphoblastic leukemia and Spinal Muscular Atrophy in more than 15 countries.  

Rare Diseases, Explained

A rare disease is a medical condition, such as a rare autoimmune disorder, cancer, genetic disease, infectious disease, or idiopathic disease, with a low prevalence relative to other common diseases. There is no universal definition of what constitutes a rare disease—the U.S., for example, considers a disease rare if it affects no more than 200,000 people in the U.S., while the European Union defines a rare disease as one affecting fewer than 1 in 2,000 people. Though these conditions are individually rare, collectively, rare diseases affect an estimated 1 in 10 people in the U.S. and approximately 400 million people globally, according to NIH. 

With approximately 10,000 known rare diseases, receiving an accurate diagnosis can be a long and challenging process, often entailing countless doctors’ visits, hospitalizations and misdiagnosis, as well as extensive travel to specialized centers and impacts on financial and mental health. Though the diagnosis of rare diseases has improved in recent years, it takes nearly five years on average to receive an accurate diagnosis, according to the National Organization for Rare Disorders. In low- and middle-income countries, where diagnostic capacities and specialist care are particularly limited, the process can take much longer.   

Although rare diseases are serious and can be life-threatening, only about 5 percent of identified rare diseases have an FDA-approved treatment, and access to therapies is often cost-prohibitive. For many people living with a rare disease, especially those in low- and middle-income countries, access to essential treatments may be entirely unavailable.   

increasing Access to Therapies for Rare Diseases

Direct Relief partners with leading biotechnology and pharmaceutical companies, as well as independent medical expert committees and rare disease specialists around the world, to increase humanitarian access to safe and effective therapies for people living with rare diseases. Since 2013, Direct Relief has supported nearly 600 people with a rare disease in more than 15 low- and middle-income countries, ensuring these patients an opportunity to improve their health and well-being.   

Direct Relief partners with Takeda Pharmaceuticals to improve the quality of life of people living with three chronic lysosomal storage disorders, including Fabry Disease, Gaucher Disease and MPS II. Through the partnership, Direct Relief is supporting nearly 300 patients globally with life-long access to enzyme replacement therapy.   

In partnership with Biogen, Direct Relief is providing access to Spinraza, a prescription medicine used to treat SMA, at 14 treating hospitals across India. Direct Relief also partners with Amgen to provide eligible pediatric patients in India, Pakistan and Vietnam with Blincyto, an advanced cancer therapy used to treat patients with ALL. Cumulatively, these programs are reaching nearly 300 patients in need.     

Direct Relief administers these rare disease programs in close coordination with the donor pharmaceutical company, independent medical expert committees responsible for selecting eligible patients, and the treating physician or facility, ensuring strict adherence to all pharmacovigilance best practices and reporting requirements.    

In an effort to advance knowledge of rare diseases and rare disease treatment globally, Direct Relief also works with pharmaceutical companies and medical expert committees to facilitate training for treating physicians around the world.   

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