News

FSR Now Accepting Applications for Patient Advocate Programs

The Foundation for Sarcoidosis Research (FSR) is searching for volunteers to join its advocacy program, designed to support the sarcoidosis community in a number of ways, from raising awareness to coaching other advocates to providing one-on-one support to patients and caregivers. The program consists of three advocate roles:…

#RAREis Representation Program Promotes Equity, Diversity

Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…

Rare Disease Day Panel Opens Window to Patient Experience

BioNews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…