The National Organization for Rare Disorders (NORD)’s Rare Disease Research Grant - Levy-Yeboa Syndrome (LYS)
NORD, with fundraising by the Maxwell Family is accepting applications for one grant, up to $40,000 US, for scientific and/or clinical research studies related to Levy-Yeboa syndrome (LYS). Levy-Yeboa syndrome (LYS) is a multi-system disorder involving signs of musculoskeletal involvement such as low muscle tone and stiffening of the joints of the arms and legs (contractions), hearing loss (neuronal deafness), intense burn-like eruptions of the skin containing clear fluid (bullous eruptions) and dangerous gastrointestinal distress involving substantial loss of fluids (secretory diarrhea), among other issues (Levy J, 2003). Most, if not all, of these signs are apparent at, or within a few months of, birth.
The National Organization for Rare Disorders (NORD)’s Rare Disease Research Grant - Levy-Yeboa Syndrome (LYS)