All are welcome at the Virtual COVID-19 Rare Disease Discussion Groups(link is external)
coordinated by the National Organization for Rare Disorders (NORD). The goal of these discussion groups is to connect as a community to exchange stories and experiences with respect to the impact of COVID-19 on patients and caregivers living with rare diseases. These meetings hosted by NORD’s Rare Action Network (RAN) Ambassadors are open to all — you do not have to be a RAN or NORD member to attend! Come ready to share your concerns on COVID-19, ask questions, and hear updates from NORD.
Some examples of discussion topics will include but are not limited to: how this pandemic has affected your rare disease treatment, medication access, and access to telemedicine. There are probably many more challenges to discuss and we welcome all experiences and feedback.
Find out when your state is hosting their meeting and register here (link is external).
If you have any questions feel free to reach out to NORD via email at [email protected] (link sends e-mail).