On Rare Disease Day 2020, join Boston Rare Connections in supporting rare disease patients affected by the Coronavirus outbreak
Who we are
Boston Rare Connections (BRC) is a rare disease patient advocacy nonprofit organization headquartered in Boston, Massachusetts. Our mission is to connect patients and their families who have rare and undiagnosed diseases with medical and scientific communities for better diagnosis and treatment.
What we are we doing on Rare Disease Day
On International Rare Disease Day, we are working to reach out to other rare patient advocacy organizations and the public on behalf of the Chinese Organization for Rare Disorders (CORD) regarding an urgent request for help for rare disease patients currently affected by the Coronavirus Disease 2019 (COVID-19) outbreaks.
Why we are doing this
The COVID-19 outbreaks have affected a total 80,239 people and resulted in more 2,700 deaths so far, with over 97% of all cases happening in China. With the increasing amount of restrictions to travel within China and worldwide, a large number of patients with rare diseases across China are now at immediate risk of losing access to important life-sustaining drugs and medical supplies. When current supplies inevitably run dry, conditions for patients with rare disease will deteriorate. In many cases, this could be fatal.
While the Chinese Organization for Rare Disorders (CORD) has released an urgent request for help from over 400 rare disease patients in China, their reach is limited to their local area. We at Boston Rare Connections aim to help amplify CORD’s request for assistance on an international scale to help them raise money and acquire resources for rare disease patients affected by the Coronavirus crisis.
How you can help
For International Rare Disease Day 2020, please join Boston Rare Connections in our work to support rare disease patients affected by the Coronavirus outbreak by spreading the word and reaching out to organization, foundations, and people in your daily lives. By using the outreach materials provided by Boston Rare Connections, anyone can join in and help us make sure that CORD has the resources needed to meet the critical needs of rare disease patients during this crisis.