SHINE Syndrome Foundation Inc
DLG4-related Synaptopathy | DLG4 SHINE Foundation
874703593
Pleasant Grove, UT 84062 USA
dlg4shine.org
DLG4SHINE
DLG4SHINE
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Novinky
Happy SHINE Syndrome Day 2024. Please like and share and help us make these smiles even brighter by supporting our mission to find or create treatment options to improve quality of life and help each affected individual reach their potential Donate here: https://t.co/boL8Z3eTbQ https://t.co/2NBGfcb7kL (tw)
In addition, with many affected individuals experiencing difficulties with communication, caregivers are often left to often wonder if abdominal pain is occurring and causing anxiety or other behavioural issues. (tw)
Poslední komentáře
So grateful for the work the DLG4 SHINE Foundation is doing! Each step towards awareness and research is a step towards hope for families affected by this rare syndrome. 💖✨detail |
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I just registered with DLG4 SHINE! Let's continue to spread awareness about this important cause and support the incredible families navigating this journey! 🌟 #SHINEbrightdetail |
Poslední diskuze
1. How can we enhance awareness and understanding of DLG4-related Synaptopathy within both the medical community and the general public to better support families affected by SHINE Syndrome?Odpovědí: 3, Naposledy před 1 den detail |
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2. What innovative fundraising strategies could the DLG4 SHINE Foundation implement to further support research initiatives and assist families coping with the challenges of this rare disease?Odpovědí: 3, Naposledy před 1 den detail |
V okolí
4.5
Pleasant Grove
O společnosti
- G20 -
Learn more about this rare disease how it affects our families and how we39re helping to find treatment. REGISTER WITH DLG4 SHINE WHAT IS A REGISTRY. NEWS Supporting Families While Advancing Research to Find Treatment for DLG4 SHINE DLG4 Synaptopathy or DLG4 SHINEis an ultrarare disease caused by a genetic mutation on the 17th Chromosome. Patients living with DLG4 SHINE typically enduretroublewithSleepDisturbancesHypotoniaIntellectual DisabilitiesNeurological Disorders andEpilepsy thus the name SHINE.
Vrozené vady, genetická onemocnění
