Today, we celebrate everybody connected to Rare Disorders.
Of course Hereditary Alpha Tryptasemia Syndrome (HATS) is not rare--it is simply rarely diagnosed. BUT, our family has 2 rare diseases possibility correlated to HATS--Mastocytic Enterocolitis and Vibratory Urticaria, as well as 2 that may not be--narcolepsy and ear canal stenosis.
In America, that includes the National Institutes of Health--providing research that resonates throughout the world. We celebrate the patients, naturally. But we especially celebrate:
- their caregivers
- the medical professions that help them
- the researchers working for cures for the patients
- the grantwriters
- the non-profits that support us like the National Organization for Rare Disorders and The Mast Cell Disease Society
- the politicians and government professionals who prioritize rare diseases
I've celebrated Rare Disease Day#RDD at the #NIH, on #CapitolHill, and with my family, several of whom have Rare Diseases as well. Wherever we are on February 28/29 each year, we are grateful.