CALLING ALL KYLES! Tall Kyles, short Kyles, young Kyles & old Kyles are needed 4/21/23 at 4pm to attempt the Guinness World Record for the largest same-name gathering (1st name only). All participating Kyles will get a free Kyle Fair T-shirt. Info https://t.co/SSfciCtIQX #KyleTX

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

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.

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”

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

For all you gear nerds out there.

This was a fun recording! Thanks for inviting me! I love how it turned out. Nice work.

This group is making it happen!

@yaya4HL

THIS 💥💥💥👇🏼💥💥💥 Josh Sommer @ChordomaFDN @cziscience

❤️❤️❤️

@lukebrosen @NeenaNizar @sixnwstevies @livinlavidalopo

This is going to be an amazing week #rareasone #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

1/4: I’m just gonna say it because our nonprofit @KIF1A has received proposals from several early startups (with big payrolled staffs) to repurpose publicly accessible compound libraries. The proposals for each ranged btw $250K-$1.5M. With the word “proprietary” all over them.

We agree w/ @KIF1A: “This guidance is more than a recommended checklist or optional reading. It turns "patient-focused" & "patient-centered" buzzwords into actions all stakeholders can take to improve the drug development process & patient outcomes. This is how everyone wins.”

#RareDiseaseStories