Rare Epilepsy Network (REN)’s Post

New Post: Mitochondrial DNA Disorders: the (long and winding) road to treatment https://bit.ly/4cpdgI3

Epidermolysis Bullosa (EB) is a rare genetic disorder that makes skin as fragile as a butterfly’s wing. Even a hug or a simple touch can cause painful blisters and wounds. EB is caused by missing proteins that should hold layers of skin together, leading to severe challenges for those living with it. While there’s currently no cure, we’re fighting to change that. 🦋💪 This #GivingTuesday, learn more about EB and help us fund the research that’s moving us closer to life-changing treatments and, one day, a cure. Together, we can make a difference for those living with EB. ❤️ #EBResearch #CureEB

#NiemannPick is a rare, fatal and progressive genetic disorder in need of safe and effective treatment options. Learn more: https://bit.ly/44t6U5P #NiemannPick #NPC1 #RareDisease

Today, we stand in solidarity with those battling Thalassemia, a genetic blood disorder that affects millions worldwide. Let's raise awareness, support research, and extend compassion to those affected. Together, we can make a difference. #WorldThalassemiaDay #RaiseAwareness #SupportResearch #Compassion #ixrlabs #ediiie #edverse #ediiie

Can Disease Be Reversed? Disease doesn’t happen randomly—it follows predictable steps. Negative thoughts distort signals, misaligning the body and setting the stage for illness. By understanding these "chapters," you can reverse the process, starting with realigning your thoughts. Learn how deep emotions influence gene expression and drive health outcomes. Your path to healing begins with a shift in mindset. #ReverseDisease, #MindBodyHealing, #GeneExpression, #EmotionalWellness, #HealingJourney, #HolisticHealth, #WellnessTips, #HealthAndEmotions, #MindfulHealing, #PositiveMindset, #WellnessJourney, #MentalHealthAwareness, #HealingPower, #HealthyLiving, #InnerHealing, #RestoreBalance, #ThoughtsMatter, #MindBodyConnection, #EmotionalHealing, #HealthTransformation, #functionalmedicinethenewstandard

Check out news highlights from the last week, including advances in #CysticFibrosis #Hemophilia and #RetinitisPigmentosa https://lnkd.in/eKkm5Vxi

World Cystic Fibrosis Day, observed on September 8th, raises awareness about cystic fibrosis, a genetic disorder affecting the lungs and digestive system. It aims to support those living with the condition, promote research, and highlight the importance of early diagnosis and treatment for better quality of life. #WorldCysticFibrosisDay, #CysticFibrosisAwareness, #FightCF, #CFWarriors, #BreatheEasy, #GeneticDisorders, #CFResearch, #SupportCF, #CureCF

Turner syndrome, description of a large (n = 389) cohort, linking phenotype to the proportion of X-chromosome deletions. Open access, https://lnkd.in/ezwSmbj4

Check out the talk of Alexander Fedintsev at #LongevitySummitDublin! In this video, you'll learn about: - Clonal hematopoiesis - Its impact on our longevity - Its connection to epigenetic age - How can we detect it and what do we do about it at Radical Life Extension Group! https://lnkd.in/dBeEHPBj

World Thalassaemia Day, observed on May 8th, is dedicated to raising awareness about thalassaemia, a genetic blood disorder characterized by abnormal haemoglobin production. Equitable and Accessible Thalassemia Treatment for All. Book a Thalassaemia Profile test with us now! #TRUSTlab #Diagnostics #bloodtest #checkup #health #laboratory #diagnosticcenter #thalassemiaawareness #thalassemia #thalassemiafreeindia #zerothalassemia