A new survey hopes to provide a better understanding of the challenges to health care access for Minnesota families as they care for a child who has a rare disease. One in ten Minnesotans are living with a rare disease.
Gillette Children's is encouraging participation in the Rare Diseases Healthcare Access Study. Gillette is known worldwide for its expert level of care for children who have rare diseases such as Rett syndrome, spinal muscular atrophy (SMA), Legg-Calve-Perthes disease, Prader-Willi syndrome and other conditions. Gillette is one of just 14 U.S. hospitals designated as a Clinical Research Center of Excellence by the Rett Syndrome Foundation.
Rare diseases are actually common at Gillette
Gillette complex care pediatrician, Arthur Beisang, MD, serves on the Chloe Barnes Advisory Council on Rare Diseases (CBACRD)—the organization sponsoring the survey. “We hope the results of this survey will lead to more effective care and faster diagnosis for patients who have a rare disease,” Beisang says.
The Chloe Barnes Advisory Council on Rare Diseases (CBACRD) was founded in 2017 to provide advice on research, diagnosis, treatment and education related to rare disease. There are more than 7,000 identified rare disease patient populations, but very little information examining the rare disease population as a whole.
Beisang is the co-director of Gillette’s Rett and Rett Disorders Clinic and the co-director of the Aerodigestive Clinic. He helped to design the online survey which should take parents and providers about 30 minutes to complete. Gillette president and CEO, Barbara Joers, also serves on the CBACRD advisory council.
The survey will ask about experiences families have encountered while seeking care for a rare disease. CBACRD will then use the survey results to identify unique barriers and recommend ways that rare disease care can be improved.
In the United States, a rare disease is defined as a condition that affects fewer than 20,000 people.
Gillette is committed to improving the lives and health of all children. “Rare diseases are actually common at Gillette,” Beisang says. “Our long history treating this patient population means we’re good at managing the health care for these children. The results of this survey will make this care even stronger throughout Minnesota.”
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