About Us
Our organization exists for the educational purpose of advancing the quality and delivery of coordinated care to chronic rare disease patients.
The Foundation is a pro-active organization which concentrates on elevating the viewpoint that the continuity of care for complex rare diseases can be systematic, leading to a consistent platform across all medical disciplines.
30 million
people live in the United States with a rare disease.
of rare diseases are genetic in origin
80%
of rare disease patients are children.
50%
Approximately
of children living with a rare disease do not see their 5th birthday.
1/3
Approximately
Current Medical Issue and Opportunity
Very few agree that pediatricians and general practitioners are aware and informed about living with chronic rare diseases. There is a perception that even specialists are lacking in up-to- date knowledge and expertise. Consensus shows that minimal time spent on education relating to understanding the daily challenges for those managing with rare disease. Feedback from specialists attending conferences has determined there is a struggle with educating younger physicians and a lack of optimal educational resources. A center with specialists of diverse backgrounds working on the same problem opens doors for collaboration and optimal results. Treating a patient with a rare disease goes beyond access to rare and expensive drugs. Rare disease centers would address a wide variety of gaps that exist in the diagnosis and treatment of rare diseases.
Patients see 5.9 healthcare professionals before final diagnosis. See a survey prepared by the Canadian organization for Rare Diseases. Patients mentioned how a lack of awareness of rare diseases can also lead to doctors being dismissive and patients needing to consult many professionals. “If one of my doctors decides to move away and I must go find somebody else, I'm going to go through the same thing where you have doctors who either don't believe in a certain treatment or don't understand the disease course or simply don't care."
Clinical management of chronic rare diseases is a multi-faceted endeavor that requires collaboration across medical specialties. It incorporates case conferences, diagnostic evaluation and leads to pathways for therapeutic steps. Clinical solutions include innovative diagnostics, novel biomarkers, and prognostic models.
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