-
How will you bring attention to ALS on Rare Disease Day?
Are we ready as a community to unite and spread the word about ALS and other rare diseases? February is Rare Disease Awareness month, and our chance to draw attention to the needs of the ALS community. Rare Disease Day is February 28th.
I want to bring attention to the need for more treatments like QALSody for our community! A cure is the ultimate goal!! I plan on posting on social media and sending information out to our local news sources.
What message or need do you want to highlight? How will you get the message out?
Light Up for Rare: How a Global Initiative Creates True Impact – Rare Disease Day 2026
rarediseaseday.org
Light Up for Rare: How a Global Initiative Creates True Impact
Every year on Rare Disease Day, landmarks around the world are illuminated in rare disease colours. Since the first edition in 2008, the Light Up… Continue reading Light Up for Rare: How a Global Initiative Creates True Impact
-
4 Replies
-
To add to Amanda’s topic:
February is Rare Disease Month.
Feb. 28th is Rare Disease Day.
-
To help raise awareness of Rare Disease Month and Day, especially so that more ALS patients understand what it is, and why it is important — I wrote a column about it, which will be published on Wed 2-18-06. I’ll make sure to repost it here.
Meanwhile, check out this webpage: https://www.rarediseaseday.org/
rarediseaseday.org
Raising awareness for patients, families and carers around the world that are affected by rare diseases.
-
Rare Disease Awareness is especially important to me because not only is ALS rare, but because there are so many “types” or “causes” of ALS, and each will need to be treated with different medications. That means we need even more research and different treatments in order to benefit our entire community.
I’ve been giving interviews and posting information on ALS and Rare disease day to help advocate and educate. I was recently interviewed by the University of Miami, and the New York Times about my ALS journey and the QALSody treatments. I was hoping they would be published on or before Rare Disease Day; however, I’ve been told that the NYT should publish sometime in March. The University of Miami agreed to give the NYT a national exclusive (I get my QALSody treatments at the University of Miami ALS Clinic), so they are holding off releasing their video.
-
To help bring awaress to Rare Disease Month and Day (2/28), here is my column I wrote about it. I think many ALS patients don’t even know about it — so if we are better informed, we can do more to support it. Go zebras!!!
https://alsnewstoday.com/columns/how-als-patients-show-stripes-rare-disease-month/
Log in to reply.