Newborn Screening
- RUSP Alignment
- ACHDNC – Why we need this committee
Advocacy
- Rare Across America … summer federal representative visits/virtual … register by July 11th
- Rare Disease Week … DC in-person Federal visits … Feb 24-26
GemmaBIO
- main site
- Brazil press release
Genotype/Pheno type … Paper
MLD Patient Powered Registry™ – Sanford Health CoRDS Registry …
EveryLife: Send us an email if you would like your alerts and/or events included! Email kjones@everylifefoundation.org.
NORD
Global Genes
Haystack
ARM
