The third graders at Roberts were inspired by @KyleABryant to find a cure for FA, a rare progressive disease. He taught us we can overcome any obstacle and to never give up! #fara#curefa#umasdistheplacetobe
On the latest Two Disabled Dudes episode, @livinlavidalopo talks about her love for Scandinavian murder shows. Sometimes you gotta lean-in to a bad day. #RareDiseaseTruth https://t.co/U0VmJwLxwj
Since the technology for bespoke genetic drugs debuted, about two dozen patients have received the infusions — costing as much as $2 million per patient. But hundreds of millions of others live with rare genetic diseases and have no treatment options. https://t.co/VWGj0qymqh
In 2017, @HorizonNews invited 2DD to do a LIVE show at their Chicago office. This was our first recording in front of a live audience! Horizon took a chance on 2 rookies to talk about Rare Diseases. Listen to that episode & count @KyleABryant’s “um’s” https://t.co/pXcoMKGCrS
Ride Wild! @KyleABryant recently assembled a six-person team to tackle a 750-mile bike packing adventure through the backwoods of Montana and Idaho. Read about their 23-day journey from Eureka, Montana, to Ketchum, Idaho at https://t.co/sAgRbQGLWF.
“How do you accelerate progress against #RareDisease?
At @ChanZuckerberg we help bolster the power of patients to build strong, inclusive communities, engage researchers in their disease areas & partner with industry to create treatments + cures.” -@TaniaSimoncelli#AspenIdeas
“There comes a point where we need to stop just pulling people out of the river. We need to go upstream and find out why they are falling in.” Desmond Tutu
Solve problems at its source.
#RareDiseaseTruth
Thanks to everyone who joined us for the 2022 #RareAsOne annual meeting! It was a great opportunity to gather and hear from our grantees, researchers and clinicians about their incredible work in finding treatments + cures for #RareDisease
JUST ANNOUNCED
#KavliPrize2022#Neuroscience honors Jean-Louis Mandel, Harry Orr, Christopher Walsh and Huda Zoghbi for pioneering the discovery of genes underlying a range of serious brain disorders and elucidating the pathways by which these genes work.
https://t.co/NnsEF3xxRC