Tag Archive for: rare diseases

2019 Living Rare, Living Stronger NORD Patient and Family Forum

The 2019 Living Rare, Living Stronger NORD Patient and Family Forum will bring the rare disease community together with physicians, medical students and health professionals for a program of learning, sharing and connection – in an atmosphere of support and understanding – plus fun! Its agenda includes sessions in which patients and families can gain insights and practical tools  for living their best lives with rare diseases, with tracks provided for newly diagnosed patients, long-term patients, caregivers and physicians/medical students. It is also an opportunity for bonding and fun, with children’s programming, a Family BBQ and a dedicated wellness room with yoga and workshops.

Registration to Living Rare, Living Stronger includes a ticket to a very special event—the 2019 Rare Impact Awards—honoring those individuals and organizations doing remarkable work on behalf of the rare disease community. The awards ceremony will take place in the unique setting of Space Center Houston, the Official Visitor Center of NASA Johnson Space Center and a Smithsonian Affiliate.

Empowered #patientchat – February 22nd

In honor of Rare Disease Day, National Institutes of Health (NIH) and National Center for Advancing Translational Sciences (NCATS) host a special tweetchat (#NIHchat) each year to raise awareness about rare diseases and their impact on patients’ lives. We hope you’ll chat along with us as #patientchat joins the #NIHchat on Friday, February 22nd.

We will not be hosting our own chat during this time, but instead invite you to join the #NIHchat as we will be tweeting from @patientchat and @power4patients. Learn more about NIH’s Rare Disease Day activities here.

I'll be at the #NIHchat with @patientchat on Fri 2/22 1pm ET. Join me! Click To Tweet