Rare Disease Day 2024

It’s that time of year again!

Every year on Rare Disease Day, I host a special live stream on Twitch to raise awareness of rare diseases and encourage everyone to donate to any of the wonderful charities out there making a difference in the lives of folks living with rare diseases!

I’m planning on going live on my Twitch channel at 9:30am EST on Feb. 29th, and I’ll be streaming until I can’t go on any longer! This can be about 4-6 hours depending on how many spoons I have that day. During this stream, I’ll be reading patient stories on the official Rare Disease Day website. Throughout the stream, we’ll also be playing Stream Raiders, so be sure to join in and add your units to the battlefield so we can beat the boss! As always, I’ll be sharing my own experiences with my rare disease and hosting a Q&A as well!

This year, I’ll also be streaming the House hearing on rare disease policy issues at 10am EST, and explaining how you can get involved and have your voices heard by policymakers in the US via NORD‘s Rare Action Network, which I used to serve as a volunteer. That was one of the most fulfilling things I ever did, and I hope to return to it one day when my health is more reliable. ❤️

Check out my Rare Disease Day stream from last year:

Consider donating to these Rare Disease nonprofits:

This is the organization I volunteered for for a couple of years, and I have nothing but kind words to say about the amazing people working there. They do incredible things that have a truly lasting impact for rare disease patients in the United States, with a truly notable impact on Rare Disease policy legislation via their Rare Action Network.

A unique, non-profit alliance of over 1000 rare disease patient organizations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally. By connecting patient, families and patient groups, as well as by bringing together all stakeholders and mobilizing the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.

This is the official organization behind all the organized efforts to support advocacy on Rare Disease Day. They do a lot of excellent work providing visual aids like graphics and educational videos each year.