🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

Life was perfect until it wasn’t. The powerful story by Sandra Abrevaya of how we found hope, No Ordinary Campaign and what comes next in the fight against ALS. newsweek.com/obama-als-whit…

I am always profoundly moved when I hear or meet #raredisease families. This #SXSW panel is so important to increase awareness of the critical role of patients and care partners. Thanks Katie Couric Tania Simoncelli David Fajgenbaum, MD Brian Wallach Sandra Abrevaya

This was a next level experience ❤️❤️

What an honor it was to talk with these incredible leaders about the extraordinary ways that patients are driving progress against #rarediseases at #SXSW! Huge thx ⁦Katie Couric⁩ ⁦David Fajgenbaum, MD⁩ ⁦Brian Wallach⁩ ⁦Sandra Abrevaya⁩! ⁦#rareasone ⁦SHE Media⁩

Barack Obama Celebrates Release of Moving New ALS Documentary with Former Staffers at SXSW people.com/health/barack-…

I'm incredibly proud and inspired by @BSW5020 and @Sabrevaya, their family, and the movement they've brought together to fight ALS. They've taken an incredibly challenging moment and are driving change. And they're not done yet.

Thank you @md_wallach! It was so wonderful to meet you and I couldn’t agree more!

This is an amazing and beautiful review by Roger Ebert of No Ordinary Campaign, No Ordinary Campaign. The review of NOC ends with a call to action... rogerebert.com/festivals/sxsw…

Thank you Barack Obama for lending your voice and support to No Ordinary Campaign and the extraordinary work of Brian Wallach and Sandra Abrevaya. In so doing you have galvanized and inspired not only 1000s of #ALS patients but ~30M Americans affected by #RareDisease. The Obama Foundation CZI Science

I’m so grateful to Katie Couric for shining a spotlight on #raredisease advocacy and the work of some of our amazing grantees! CZI Science Brian Wallach David Fajgenbaum, MD Sandra Abrevaya sheknows.com/health-and-wel…

Alice Ting congratulations Alice Ting !!

Change is slow, but possible!!!

Forever grateful to Association for Molecular Pathology for stepping up to be our lead plaintiff in this case!

In a new piece for Issues in Science and Technology, Tania Simoncelli of CZI Science explores the successes of patient-driven #RareDisease research and how stakeholders can support these efforts, address inequities in #BiomedicalResearch, and improve #PatientEngagement. Read: ow.ly/S50o50Pw8Oj

Centering patient communities leads to unique insights + perspectives that can only come from day-to-day knowledge of #RareDisease. Read more from CZI Science’s Tania Simoncelli on how we’re supporting patient-led research #RareAsOne bit.ly/3DO4hjh

I'm so honored to join the Board of Directors for Every Cure! I'm so excited to work with this extraordinary group of board members and leadership to unlock the full potential of every approved medicine to treat as many diseases as possible.

Thanks to support from CZI Science, our trailblazing org is transforming what is possible for babies at risk of NEC. We can’t wait until we have a 🌎 without NEC - we will get there. We are moving the science as fast as we can to make it happen. #preventNEC #RareAsOne

No Ordinary Campaign Thanks to everyone who joined us for our 2023 #ScienceInSocietyMtg! It was a great opportunity to gather + hear from patient leaders, researchers & clinicians & other stakeholders about their incredible work toward finding treatments + cures for #RareDisease

So thrilled to announce the 3rd Cycle of Chan Zuckerberg Initiative's #RareAsOne Network, open to #RareDisease patient organizations around the world working to accelerate research in #channelopathies #ciliopathies and inborn errors of #metabolism. Applications due Feb 22!

Thank you for the visit Tania Simoncelli!