🦓 Zebras spotted at #NORDSummit 1: Laquinta Jernigan, Sarrah May, and Miriam Dervan from @mdgroupintl show off their zebra scarfs 2: Zebras at the @AlexionPharma AstraZeneca booth 3 & 4: Custom rare disease jacket from Seth Fritts of @AcadiaPharma

NORD Breakthrough Summit | Day 2 @RareDiseases Vice President of Community and Medical Affairs, Marybeth McAfee moderates a panel, "Rare Disease Centers of Excellence in Action: Advancing Diagnosis, Care, and Research," featuring leaders from three leading Centers of Excellence: - Beth Kozel, MD, PhD, Chief of the Division of Genetics and Genomic Medicine, @nationwidekids - John A. Morren, MD, MEd, FAAN, FAANEM, Director of the Neuromuscular Center, @ClevelandClinic - Eyby Leon, MD, Program Director of the Medical Genetics Residency and Medical Geneticist, @ChildrensNatl #NORDSummit #NORD #RareDisease #RareDiseaseResearch

CNBC's @BeckyQuick, rare disease mom, co-anchor of Squawk Box, and host of CNBC Cures, moderates a high-level CEO discussion on "The Next Decade of Rare Disease: A CEO Leadership Dialogue." The panel features: - Renee Gala, President and CEO, @JazzPharma - Pamela Gavin, MBA, President and CEO, @RareDiseases - Alexander Hardy, President and CEO, @BioMarin - Tarek Rabah, President and CEO, @OtsukaUS #NORDSummit #RareDisease #RareDiseaseLeadership

NIH Director Jay Bhattacharya, MD, PhD, discusses the importance of including patients, families, and caregivers in the NIH's work. " We need to give greater attention to the viewpoints from patients and families." #NORDSummit #RareDisease #PatientVoice

FDA Acting Commissioner Kyle Diamantas discusses how the FDA plans to incorporate the voices and experiences of people living with rare diseases into its decision-making. #NORDSummit #RareDisease #PatientVoice

CheckRare is proud to once again partner with the @RareDiseases NORD Breakthrough Summit, connecting with leaders who are advancing the rare disease community. We look forward to learning from inspiring voices like Pam Gavin, President & CEO of NORD. #NORDSummit #RareDisease #BecauseRareMatters

CheckRare is excited to report on the latest rare kidney disorder developments from ASN Kidney Week 2026 in Denver, Colorado. Keep an eye out for our coverage from the meeting #KidneyWk

Are you tuning in to the NORD Breakthrough Summit, October 26 and 27? You can still register to virtually attend this annual gathering of the national rare disease community—featuring CNBC’s Becky Quick and the leaders of the FDA and NIH—from wherever you are right now. Join us: nordsummit.org/?utm_source=c…

🧬 Advancing research in hypochondroplasia Phase 3 results from the CANOPY-HCH-3 trial show that vosoritide improved annualized growth velocity compared with placebo in children with hypochondroplasia. Researchers also reported improvements in arm span. These findings represent an encouraging step toward understanding new potential treatment options for people living with hypochondroplasia. Learn more from CheckRare: checkrare.com/efficacy-of-vo… #Hypochondroplasia #Vosoritide #RareDiseaseResearch #ClinicalTrials #RareDiseaseAwareness #RareMusculoskeletal

💜 October is Rett Syndrome Awareness Month The Rett syndrome landscape is always evolving, and better diagnostic understanding and novel treatment options are continuing to improve patients outcomes. Learn about the latest in treatments and clinical developments at checkrare.com/rett-syndrome-… #RettSyndromeAwarenessMonth #RettSyndrome #Rett #RareDisease