The Inflation Reduction Act of 2022 (HR 5376) will help individuals with rare diseases — such as aromatic…
Articles by Mary Chapman
The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person…
Because the rare disease community needs allies to promote its interests in areas that include health parity, proper diagnoses, treatment…
Global Genes has opened its 8th annual RARE Compassion Program, an education initiative that connects medical students with rare…
The Critical Path Institute (C-Path) has announced a public-private partnership seeking to accelerate the development of safe and effective treatments for…
QualityMetric and Pulse Infoframe are collaborating to develop instruments across rare diseases to support global research initiatives, including…
To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual…
Providing constant care and supervision to a child with a chronic disease such as aromatic l-amino acid decarboxylase (AADC)…