In the US, patients living with rare disease visit an average of 7.3 physicians before receiving an accurate diagnosis, a process that takes an average of 4.8 years. Because so many rare diseases are progressive in nature, delaying diagnosis means a delay in treatment – if any is available. This can have negative health consequences for patients. Rates of, and time to, diagnosis are worse in low-to-middle income countries where there is limited information about rare diseases, access to specialists and access to genetic testing. In addition, there is limited public awareness and understanding of rare diseases which may result in stigmatization as well as denying them access to healthcare and supportive services. Even when a diagnosis is obtained and a treatment is available for the disease, access to expensive treatments is mostly non-existent due to lack of reimbursement.