When will IRF2BPL-NEDAMSS Awareness Day be celebrated? The third Wednesday in August of each calendar year.
What is IRF2BPL-NEDAMSS Awareness Day? We are bringing advocacy and awareness to IRF2BPL NEDAMSS which is an ultra rare fatal progressive neuro degenerative disorder affecting roughly 50 plus or minus known cases globally. Most children affected do not make it see their 10th bday. We are working on developing a viable treatment for all individuals afflicted by this horrific disorder. Having this awareness day helps us shed light on our rare disorder and hopefully get us closer to a viable treatment once and for all! Every 3rd Wednesday in August we will be bringing IRF2BPL awareness!
How should IRF2BPL-NEDAMSS Awareness Day be celebrated or observed? Please share IRF2BPL-NEDAMSS stories, and wear yellow to reflect our color of hope.
Why was IRF2BPL-NEDAMSS Awareness Day created? Our foundation Yellow for Yiannis IRF2BPL-NEDAMSS foundation has created this day to shed light on our rare disorder. Bringing awareness and advocacy is huge but also brings our disorder community together in solidarity to move mountains! We are very excited to have a day to observe the scientific strides we are making, honor the children we have lost to the disorder and look for hope in developing a viable treatment.
Who created this day? This day was created by Yellow for Yiannis LTD in 2026.