RARE-X

Welcome and Congratulations to The SHANK2 Foundation who is also launching their Data Collection Program today! The SHANK2 Foundation is aimed at bringing together all individuals affected by SHANK2 variants–including carriers, families, researchers, clinicians, and industry partners. #BeCounted #CareAboutRare

Welcome SOX6 Foundation to RARE-X. Lets celebrate this amazing group and congratulate them on launching their data collection program today. The SOX6 Foundation is dedicated to supporting and advancing Tolchin-Le Caignec syndrome treatments, research, education, awareness, and family networks. #BeCounted #CareAboutRare

Welcome Pompe Consortium to RARE-X. The Pompe Disease community is coming together to launch a new data collective initiative to accelerate research and insights. Lets celebrate this amazing community and congratulate them on launching their data collection program today. #BeCounted #CareAboutRare #pompedisease

Exciting News for Global Gene's RARE-X and Sleep Consortium! “Through this collaboration with RARE-X, we are shining a light on the complexities of central disorders of hypersomnolence,” said Lindsay Jesteadt, CEO of Sleep Consortium. “By empowering patients to share their data, together, we are driving forward the research necessary to develop meaningful treatments and outcomes. This initiative is a beacon of hope for those affected by these conditions, aiming to enhance their quality of life through innovative research and data sharing.” Details of the Sleep Data Collection Initiative launch are shared in the press release here: https://lnkd.in/euZ22SrD #CareAboutRare #BeCounted #Hypersomnolence

This week members of the Community Engagement and Research teams at RARE-X are attending the HDSA 39th Annual Convention. If you are in attendance, stop by and see them in the exhibition hall right across from registration! #CareAboutRare #BeCounted #HDAwarenessMonth #LetsTalkAboutHD #HDSAFamily #HuntingtonsDisease

This week our team has been busy welcoming Class 10 to the RARE-X Platform! As we reflect on collaborative efforts of the RARE-X team, we are thrilled to be hitting a huge milestone with our 10th class. Not only that, but collaborating with this incoming group brings the RARE-X Data Collection Program to a total of 115 Patient Advocacy Groups! Our team is working hard to ensure our groups are getting the most out of this collaborative effort to drive forward data collection in rare diseases. We are excited to be collaborating with 8 new patient advocacy groups as they start their data collection programs. ✨ Welcome All! To learn more about joining RARE-X please contact our community engagement team at [email protected] #BeCounted #CareAboutRare

✨ It's time to mark your calendars for Week in RARE. Join us in Kansas City, MO, from September 25-28, 2024, at the fabulous Loews Kansas City Hotel. 3 events packed into 3 days! Take advantage of our early bird pricing available until July 14. Don't miss out - secure your spot now. In honor of our 3 and 3, chose from 1 of our 3 photos to share the news with your friends. Learn more: https://lnkd.in/eDkTyUHg #WeekinRARE #RARESummit #RAREHealthEquity

Senior Director of the RARE-X Research Program, Zohreh Talebizadeh, Ph.D. will be presenting today during the Natural History Studies & Registries in the Development of Rare Disease Treatments workshop starting at 10 am EDT. Catch her panel at 11:25 am - Addressing Challenges in Registry and Natural History Data Collection. Virtual registration is free: https://lnkd.in/ehawv3HQ

Welcome Salla Treatment and Research Foundation (STAR) to RARE-X. Lets celebrate this amazing group and congratulate them on launching their data collection program today. The Salla Treatment and Research Foundation is dedicated to supporting and advancing Salla disease treatments, research, education, awareness, and family networks. #BeCounted #CareAboutRare

Thank you to all who joined us yesterday for the RARE-X Users Meeting, the Exchange, and reception! #BeCounted #CareAboutRare Global Genes