Me at the end of #RareDiseaseTruth month. 3 days left. 28 personal truths posted in total. Countless others read and felt deep in my bone weary core. I love my #RareDiseases and LGS Foundation community. I’d be lost without you. Bring your own wine though. I don’t have extra. 🙂

#RareDisease discussion tonight with Medidata Glen de Vries on #CTSM reminds me of how critical unlocking every single data point and sample is for rare disease research...

Tell me who your #RareResearchHero is!

Aw yay!!! #careaboutrare #globalgenes

Closing thoughts from Scott @PRAHSciences #RareResearchHero webinar for #RareDiseaseDay2021 #RareDisease #RareTogether

Even when the pain was at its worst, his wish was for eveyone else to be free of all pain. This boy shows me every day what it looks like to think about others. #RareDiseaseTruth

*Save the date * for the #RareDisease event of the year, an #International #virtual #Dance The Light Collective ☀️ People with Empathy Flutters and Strutters (Formerly FibroFlutters) Ataxia and Me CIO 1184030 follow us form more details

The good thing about having a toddler? I got to wear multiple #raredisease shirts today for #RareDiseaseDay2021. Ending the day with KIF1A.ORG Also. Getting to dress@that toddler up like a zebra!

"The lives of rare disease patients are as important as the lives of covid patients!" - Dr. Chris Austin NCATS #RDDNIH Hallelujah! #RareDiseaseTruth

#raredisease #careaboutrare #FutureRAREAdvocate

It’s just a KIF1A.org kind of day :) also, this shirt is lovely and soft!

1/4: I’m just gonna say it because our nonprofit KIF1A.ORG 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.

2/4: We’re a patient-driven org running on hard earned grants & lemonade stands. We don’t want a percentage of the output (you probably even already have a provisional patent). The only ROI we’re interested in is seeing our kids walk. All our tools are publicly available for you.

3/4: so this will be unpopular, I know. But, Dear certain startups: the rare disease community is starting to feel a bit preyed on. If you really believe in your science, invest in your company, dont ask patients & families desperate for anything to do it for you while you

4/4: staff up, go on million $ raises, & tell us we can’t share output. So, step up & believe in yourselves. You’re the company. Cross the finish line & find treatments for our kids. That’s all we care about, & we don’t have millions. Collaborate & help us. We’d be very thankful.

I can’t wait to moderate this incredible panel discussion! Check it out. #Accessibility #clinicaltrials #RareDisease xtalks.com/webinars/rare-…

Rare disease populations are intersectional. Join us as we explore ways to improve engagement, accessibility and inclusion by planning for disability in #raredisease clinical trial design. bit.ly/rare-disease-w…

Check out this amazing challenge! And support if you can : ) charity.pledgeit.org/f/AU1EEBU1W6