Author Archives: Hawken Miller

Organizations Rally to Help Ukrainian Rare Disease Patients

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…

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…

Q&A With RARE-X Disease Data Platform Founder, Nicole Boice

The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…

Rare Disease Day Events Bring Awareness, Equity to Patients

Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…

FSR Campaign Elevates Awareness During Black History Month

In late 2012, Rhonda Underhill started having headaches and extreme fatigue. She attributed it to the long hours she was working as a general manager for a small business in Maryland. Rhonda Underhill (Courtesy of The Foundation for Sarcoidosis Research) After rounds of MRIs, misdiagnoses,…

Campaign Focuses on Impact of Sarcoidosis on African American Women

The Foundation for Sarcoidosis Research (FSR) announced its newest initiative this month, the African American Women & Sarcoidosis National Campaign, to bring awareness to how this group is disproportionately affected by the disease and to educate people living with the disorder. African American women are three times more…