List of Rare Diseases Tops 10,000 – and Is Growing – New Analysis Finds
Note: This story was updated July 13, 2022, to correct the name of Rare-X’s CEO Charlene Son Rigby. Nonprofits, scientists, governmental organizations, and…
Hawken Miller, features writer — 
Articles by 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.
Telehealth Added to Latest Digital-friendly NORD State Report Card
The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to…
RaDaR Serves as Starting Point for Creating Rare Disease Registry
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities…
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…
Surge in Telehealth Brings Access, Convenience to Rare Disease Patients
A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of…
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…
More Studies Confirm Hefty Economic Burden of Rare Diseases
It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.