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
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In honor of International Children’s Growth Awareness Day, the Overgrowth Syndromes Alliance (OSA) would like to emphasize the importance of not overlooking overgrowth+ in individuals. View our OSA bifold (linked below) to learn more and access a list of overgrowth syndromes: https://lnkd.in/eWwGtafd Malan Syndrome Foundation Tatton Brown Rahman Syndrome (TBRS) Community Inc. SOTOS SYNDROME SUPPORT ASSOCIATION Smith-Kingsmore Syndrome Foundation #OvergrowthSyndromesAlliance #OSA #DontOverlookOvergrowth #StandardsofCareinRare National Organization for Rare Disorders Global Genes
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📣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
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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
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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
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