Overgrowth Syndromes Alliance (OSA)

📣We are pleased to announce a new publication- the first PATIENT perspective article and a collaborative effort between the Tatton Brown Rahman Syndrome (TBRS) Community Inc. and the Malan Syndrome Foundation ! "Epilepsy and overgrowth-intellectual disability syndromes: a patient organization perspective on collaborating to accelerate pathways to treatment" is now available online in the journal Therapeutic Advances in Rare Disease. This article introduces the Overgrowth Syndromes Alliance (OSA), highlighting a patient-first approach to research and treatment development. It also brings much-needed attention to seizures in overgrowth-intellectual disability (OGID) syndromes. Patients can use this publication to inform their primary care doctors and neurologists about OGID syndromes and associated symptoms. Together, we are making strides towards better care and outcomes for our community. Read the full article and learn more about how we're working together to make a difference! 🌟 https://lnkd.in/eF9A7jSJ #RareDisease #OGID #Overgrowth #TattonBrownRahmanSyndrome #MalanSyndrome #PatientFirst #CollaborativeResearch #epilepsy

OSA patient advocacy leaders attend the Global Genes and Orphan Disease Center Rare Drug Development Symposium 2024. Collaborating to drive patient-centered research forward! #OSA #RDDS #overgrowth 

OSA's Kerry Grens had the privilege of sharing the results of our patient priorities survey with the Washington University community on Rare Disease Day! If you or a loved one with an overgrowth syndrome would like to contribute your perspectives on your highest priorities for treatment, please contribute to the survey--it's still open! https://lnkd.in/eYqSrxUv

Looking forward to presenting today on "Patient Involvement in Priority Setting for Research in Overgrowth and Intellectual Disability Syndromes" at the North Carolina Medical Genetics Association (NCMGA) Meeting, Duke University. #malansyndromefoundation #overgrowthsyndromesalliance

MSF President- Kimberly Ventarola and Director of Research- Christal Delagrammatikas spent the last few days in Washington DC representing the Malan Syndrome Foundation Christal and other rare leaders from 60 genetic neurodevelopmental advocacy organizations attended the COMBINEDBrain Annual Research Strategy Symposium to learn of ways to fast-track collaborations on translational research. The next day, Kim joined Christal at the National Organization for Rare Disorders Inc. (NORD) #RareDisease Summit to participate in informative discussions on modern issues facing the rare disease community and how to partner for progress. We were thrilled to present a poster on the Overgrowth Syndromes Alliance (OSA) Patient Priorities with leadership from the Tatton Brown Rahman Syndrome (TBRS) Community Inc. The best part? We had the pleasure of hanging out with a few rockstar Malan families that joined us at Summit! COMBINEDBrain - Outcome Measures and Biomarkers for Neurodevelopmental #COMBINEDBrain #NORD #MalanSyndrome #PartneringforProgress #rareadvocacy

Come visit OSA co-founder Christal Delagrammatikas at our poster on treatment priorities among the overgrowth / OGID patient community!

Kit Church, TBRS Community Research Coordinator, presented the Overgrowth Syndromes Alliance poster "Introducing the Overgrowth Syndromes Alliance (OSA): A consortium to identify shared biological pathways and therapeutic targets" at the Chan Zuckerberg Initiative Science in Society 2023 Annual Meeting: Advancing Patient-Driven Research in Rare Disease (September 20-23, 2023). The poster includes preliminary results of the OSA Patient Priorities Survey, a short, online survey to gather valuable insights on the greatest needs of individuals living with an overgrowth and intellectual disability syndrome. Survey participants will help shape the future of research and direct it toward what matters most to people with these complex, genetic disorders. The results will also be presented at the National Organization for Rare Disorders Summit and the TBRS Summit this October. OSA is driving advancements in areas that truly make a difference! If you aren't able to see the results in person, please contact us and we'd be happy to share them: kerry@tbsryndrome.org. If you are a caregiver or a person diagnosed with an overgrowth and intellectual disability syndrome and would like to participate in the OSA Patient Priorities Survey, please email: kit@tbrsyndrome.org #CZI #NORD #overgrowth #raredisease #medicalgenetics

Hello from the new Overgrowth Syndromes Alliance! We are here to represent the interests of those with overgrowth-intellectual disability (OGID) syndromes and to advocate for research. We are four parents--an educator, a nonprofit executive, a scientist, and a writer--who have had great success leading research initiatives and support programs for their respective #OGID organizations. Over the years, we recognized that the clinical, educational, emotional, and social needs of our children overlap in significant ways, despite having different diagnoses. Research now indicates that these shared clinical findings in OGIDs might be due to shared biological pathways. That's where the OSA comes in. We aim to amplify patient perspectives on their highest priorities for treatment and push for collaborative research on OGIDs to ultimately meet these urgent therapeutic needs. We have had tremendous interest from the OGID community, and we are grateful for the participation of all those listed below. Already, we have gathered the treatment priorities of nearly 400 individuals with an OGID and are disseminating the results of the OSA Patient Priorities Survey beginning this week! You can find us at Chan Zuckerberg Initiative's Science in Society's annual meeting. In October, we'll be presenting at the TBRS Summit and National Organization for Rare Disorders Summit. If you are an OGID researcher, patient, family member, or advocate, please reach out--we hope to connect with you!  Kerry Grens & Jill Kiernan, Tatton Brown Rahman Syndrome (TBRS) Community Inc. Christal Delagrammatikas & Kimberly Ventarola, Malan Syndrome Foundation 🌟 Special thanks to: Katherine Church, Research Coordinator of the TBRS Community Child Growth Foundation CLOVES SYNDROME COMMUNITY M-CM Network Sotos Syndrome Australasia Sotos Syndrome Support Association Smith-Kingsmore Syndrome Foundation A.S.S.I. GULLIVER ASSOCIAZIONE SINDROME DI SOTOS ITALIA APS AESS Sotos Syndrome Spanish Assoc. Beck-Fahrner Syndrome Foundation Luscan-Lumish Syndrome SETD2 Support Harrison gabel Kristen Kroll #raredisease #geneticdisorder #overgrowth #geneticsyndrome #intellectualdisability #advocacy