Disease is one of the greatest challenges in life. Feb. 29, a rare day needed to align our calendars with the Earth’s revolutions around the sun, is also Rare Disease Day. The sponsor, NORD, the National Organization for Rare Disorders, holds this day to increase awareness in the wider community about rare diseases.
The day allows patients to share their stories and promote awareness of the challenges, hopes, and needs of those living with rare diseases. Mary Dunkle, vice president of education for NORD, told me, “This special day only happens once this year, but NORD tries to keep the sharing spirit alive all year long.”
Hopefully, an awareness of the roughly 7,000 rare diseases currently identified will lead to their earlier and improved diagnosis, support the development of better national policies to deal with them, increase research and orphan drug development to treat them, and reduce the isolation felt by patients and families enduring them.
When doctors are exposed to patients with rare diseases—something NORD strives for—their minds are opened to new possibilities for diagnosing and treating all diseases. One of NORD’s slogan is “If you hear hoof beats, don’t assume it is a horse—it might be a zebra.”
Inspired by NORD, I would like to introduce some children’s books about diseases and disabilities.
‘Mama Zooms’ by Jane Cowen-Fletcher
