Rare Disease Day 2023

February 28, 2023 is Rare Disease Day.
A movement created by Eurordis, Rare Disease Day unites an international community and promotes progress for all those affected. Rare Disease Day raises awareness for the 300 million people living with rare disease around the world and their families and carers; including our 2,000 cystinosis warriors.

Here are some resources and ways to participate in Rare Disease Day 2023:

Virtual Meetings. Join the discussion, “Intersections with Rare Diseases – A patient focused event” February 27, 9:00 am – 4:45 pm ET. Rare Disease Week on Capitol Hill activities through EveryLife Foundation. In the UK: Improving Care Coordination for Rare on March 2, 11:00 am – 13:00 pm GMT.

Share your rare. Take a selfie using Rare Disease International’s virtual photo booth, share your cystinosis story with us at info@cystinosis.org or visit rarediseaseday.org/share-your-story. Need inspiration? Read about Reza’s cystinosis story here.

Use your voice. Provide feedback to the NORD/Rare Disease Diversity Coalition (RDDC) survey to be heard, included, and counted. This national survey of underrepresented rare disease patients will help us better advocate for equal access to care for all people living with rare diseases.

Light Up for Rare by illuminating your home or a monument in your city.

Find an event in your area via the Rare Action Network.

Rare Disease Basics. Learn and share the basics of your rare disease with this intro to cystinosis video and our Cystinosis 101 page.

Rare Equity Guide; How can we achieve equity for people living with a rare disease? Tune in to the Understanding the Emotional Health of Rare Disease Patients session from Global Genes.

Research Participation. This cystinosis study can be completed from home. Have questions? Join this live Q&A event with researchers.

Guides for Rare Adults. Download the Rare Disease Employment Toolkit and Living rare: Family Planning Toolkit.

Rare Programming. Take advantage of the special programming offered by your patient advocacy organization.

Self care. It can be easy for rare patients and caregivers to over look their mental health. If you are in crisis, please reach out.

Make a donation. Donate time by volunteering with the CRN [info@cystinosis.org] or support our mission with a monetary contribution.