Nasha Fitter, CEO of the FOXG1 Research Foundation and Vice President of Rare Disease at Ciitizen, describes what it is like for parents of children with rare diseases and gives advice to parents whose children have just been diagnosed.
Raising a child with a rare disease, as Ms. Fitter asserts, is exhausting and requires individuals to take on multiple responsibilities. These often include learning the science behind their child’s rare disease(s), taking care of their child who is often sick, raising money for a disease most people have not heard of, and maintaining a day job.
Ms. Fitter advises newly diagnosed parents to take it one day at a time and remember they are not alone. She also advises parents to be realistic about the number of goals they can achieve to avoid burnout and to be strategic about achieving those goals.
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