As seen at #WeekInRARE, Jeff Levenson’s film “Life Through A Lens,” tells of a Hollywood photographer whose “life through a lens” gets turned upside down after he is diagnosed with a rare, debilitating genetic disease, APBD. 🎥 🌟 Watch this film now! go.globalgenes.org/4dMkMw5

We are honored to have participated in @GlobalGenes: Week in Rare! Hearing the latest insights and innovations from across the rare disease space has only strengthened our commitment to pushing the boundaries of research and advocacy. Collaboration is key. #WeekinRARE

@S_Searchlight had a great time at #WeekInRARE! 🌐 We connected w/new & returning friends at our booth. 🎤 Erica Jones moderated a panel on event planning. 🧬 Drs. Chung & Foss-Fieg spoke on data strategies. 🏆 Dr. Chung was honored w/ the RARE Champion in Health Equity Award.

APBDRF's Co-President, Jeff Levenson, DDS, Ronete Levenson and Corey Hacker an APBD volunteer and pediatric nurse, attended the @GlobalGenes Week in Rare Conference, in Kansas City, Missouri, on Sept. 26-28. #APBD #GlobalGenes #WeekinRare

Please join me in congratulating and celebrating our @ctnnb1cc leader, Emily Amerson. She has elevated our organization with her kindness, transparency, and relentless drive to our cause. Emily leads with love (her soft-spoken southern accent might help, but don’t be fooled - she’s a force!), and her impact has been nothing short of incredible. 💙 💛 Like any authentic leader, she’s questioned this path - wondering if she’s good enough, smart enough and probably muttering a few choice swear words. But those qualities are exactly what make her so effective and relatable. Last week at @combined_brain (an incredible org driving progress in rare genetic disorders) Emily was honored with a well-deserved award for her skills and dedication. She’s the gold standard in rare disease leadership, not just for our community, but in how we collaborate with all stakeholders. I couldn’t be prouder of her, and we’re beyond lucky to have her guiding us. Rare disease players, if you haven’t met Emily yet, please introduce yourself! #CTNNB1 is on 🔥 all around the world and we are so proud to be united with one another in our efforts. #RareDisease #GeneticTesting #WeekInRARE #Caregiver #AdvocateLikeAMother @GlobalGenes

As seen at #WeekInRARE, our Event Planning Toolkit is LIVE! Global Genes partnered with Simons Searchlight to bring you the ultimate toolkit companion. Access this toolkit now! 📝 globalgenes.org/toolkit/even…

This past week I spent an incredible time at @GlobalGenes’ #WeekInRARE! It was all that I had hoped for and more. I had the pleasure to reconnect with familiar faces, meet new rare #ChangeMakers and lend my voice to the global space of #rare. Read more: facebook.com/KendraGottslebe…

We are thrilled to celebrate Erin Murphy, Executive Director, Corporate Affairs, who was awarded the Rare Champion of Hope – Industry award by Global Genes. This well-deserved recognition reflects her passion for advocating for those living with rare disease, and this prestigious honor is a testament to her extraordinary work. Please join us in congratulating Erin on this remarkable achievement! #RAREChampion #WeekInRARE #CareAboutRare

WashU was honored to attend Global Genes #weekinrare in Kansas City, MO, where hope, patient advocacy, and action unite.

Ready to start the last day of #WeekInRARE @GlobalGenes with the #HealthEquityForum to discuss community engagement and patient engagement in #RareDiseases Happy to talk about our work with @ReMexER1 and @CEPCAL_LATAM to improve access to diagnostics in Mexico & Latin America

Day 2 of @GlobalGenes #WeekInRare #cystinosis #RareDisease #advocates

Global Genes is pleased to announce the winners of our 2024 RARE Champions of Hope! See below to read more about each individual and their background. Thank you for all of your incredible work in the rare disease community! 🏆✨️ #WeekInRARE #COH globalgenes.org/blog/2024-ra…

We had a wonderful few days at the Global Genes' 2024 Week in Rare conference in Kansas City! This year’s theme, There’s No Place Like Hope, set a remarkable tone as we gathered together as one rare disease community to discuss the most critical issues and advance the care for rare patients. Thank you, Global Genes, for organizing an inspiring and impactful event and for offering hope for those impacted by rare diseases! #WeekInRare #TheresNoPlaceLikeHope #RareDisease

Live from Kansas City, our Noah Siedman has updates from the @GlobalGenes RARE Advocacy Summit, where he joined the Rare Siblings panel earlier today. Stay tuned for a full report from Noah in next week’s newsletter! Join our email list: ow.ly/e4vN50Txva0 #WeekInRARE

Day 2 of Week in RARE has, yet again, been filled with inspiration and powerful messaging! We can't wait to see what resources and valuable information our speakers have to share this afternoon! 🦓🙌 #WeekInRARE #RAREAdvocacySummit

#WeekInRare: Vera Luxner, RDA Director of Advocacy Relations, speaks with @LaraBloom, President & CEO of @TheEDSociety, about building & sustaining non-profits in the #RareDisease space, & supporting health professionals. Watch the full recap: bit.ly/3ZIpMys @GlobalGenes

"Having a brother with a rare disease created a bond within the family that can't be explained. We are so thankful and proud of who we are because of it." - Matt Flesch #RareDiseaseSibling #WeekInRare @GlobalGenes

“You don’t have to advocate alone, bring your community with you.” - James Griffin T2: Empowering Advocacy: Federal, State & Patient Insights. @GlobalGenes #weekinrare #rarehealthyequity #raresummit #ggsummit

"My parents were always pushing my brother and reminding him of all the things he needed to do every day for his health - it frustrated him always being told what to do by mom and dad. As his brother I could step in and be like, bro take your pills - it was easier for him to take care of things when it was coming from me. I could tell my parents to lay off and we could just be chill about it " -Mat Flesch #RareDiseaseSibling #KidneyTransplant #WeekInRare @GlobalGenes

"It was really scary when the adults didn't have the answers to my questions about my sibling." -Noah Siedman #Sanfilippo #RareDiseaseSiblings #WeekInRare @GlobalGenes