We had our first Back To School support group meeting on Zoom in August 2022. Our center discussed the CAH-specific 504 Plan and IEP templates that list accommodations that we regard as useful for students with CAH. We have been encouraging parents to consider requesting a 504 Plan to be created at their school.
CAH Posts
Spanish CAH Support Group
We are excited to start up our newest CAH Support Group for Spanish-speaking parents. In LA we serve a patient population that is 60-70% Hispanic. Parents can be bilingual or monolingual, Spanish-speakers. Families can be faced with challenges that range from access to education, support events, and culturally-specific factors. Our first event is on Zoom this Tuesday Feb 15, 630PM. Contact nicole_fraga@alumni.brown.edu to RSVP!
Estamos muy contentos de iniciar nuestro nuevo grupo de apoyo de CAH para los padres de habla hispana. En Los Ángeles servimos a una población de pacientes que es 60-70% hispana. Los padres pueden ser bilingües o monolingües, hispanohablantes. Las familias pueden enfrentarse a desafíos que van desde el acceso a la educación, eventos de apoyo y factores culturalmente específicos. Nuestro primer evento es en Zoom este martes 15 de febrero, 630PM. Contacte con nicole_fraga@alumni.brown.edu para confirmar su asistencia.
Fludrocortisone Shortage
Yes, there is a shortage. Teva is the manufacturer of the “yellow pill” and their production is on hold until June.
Impax is the manufacturer of the “white pill” (you thought it couldn’t get worse than having to take a white fludro pill) which was doing a fine job pinch-hitting until supplies ran short. That is what happens when the yellow pill is on hold… Impax is busy making more, but your local pharmacy may be running short.
NADF and CARES Foundation are doing their share advocating for families with primary adrenal insufficiency (thanks!!). Here is the latest NADF update:
Click to access Fludrocortisone-Bulletin-2.25.19.pdf
Large, specialty pharmacies are more stocked with surplus so that may be one way to go until the white – and yellow – pills are back in abundance.
CAH Kids 