It’s that time of year again! As always, I get REALLY into #RareDiseaseDay festivities all throughout the month, culminating in a big charity event on Rare Disease Day, which falls on the last day of February. I’m excited to share that not only am I doing the usual Rare Disease Day charity stream on my Twitch channel, but I’ll also be hosting special advocacy events throughout the month and on Feb. 28th on Spatial as well using this nifty new Rare Disease Day world I’ve created for the occasion.
Twitch Charity Stream
I’m planning on going live on my Twitch channel at 10am EST on Feb. 28th, 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. I’ll also be drawing doodles as a “thank you” for donating $5 (or more) to the rare disease nonprofit of your choice (just post a screenshot showing proof of your donation to my discord server in the #donations channel or donate to my Extra Life campaign using this incentive.) 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!
Check out my Rare Disease Day stream from last year:
I’ve been posting videos to TikTok to raise awareness for #RareDiseaseDay as well!
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.
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.