Today sees the Science Sessions at #bdsraconference2021 We have a 'Batten 101' introduction, followed by an overview from @DrDavidPearce with Q&A then collected short presentations from Batten researchers all over the world (with Q&A) @BDSRA
It's in press! Highest rated guidelines published for a rare disease! Very proud to announce the publication of guidelines for CLN2 disease. Earlier diagnosis; coordinated, informed, multidisciplinary care. #RareDisease#Awareness#guidelines
https://t.co/1OkThvY7GL
The Noah’s Hope founders Jennifer and Tracy lost two children in less than two years to CLN2 Batten disease and continue to advocate and push for treatments.
https://t.co/eYAwuR91we
#raredisease#careaboutrare#2019GGSUMMIT
@Carebeyondd looking forward to seeing what the next two weeks will bring on our African Taskforce. Progress so far highlights the passion all those involved have to see change in the care of rare disease patients in Africa #Rarediseases#Rarediseaseeducation#dazzle4rare
#BREAKING: #Dazzle4Rare2019 has surpassed TWO MILLION impressions!!!
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Added partners around the world ✅
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‼️We still need your help‼️
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Can we quadruple our numbers!?? 🤔
Don't tell me we can't. 🤨
We ARE #StrongerTogether! 💪
#Dazzle4rare
A2: Remind your “typical” child that they are a great sibling. Talk to them about the differences, and help them understand why your “rare” child might need extra help or attention. Rare sibling love can be really special. #lovingrarechat
A parent shares what it's like to be told to try to give an undiagnosed child a 'normal life': "Without a diagnosis, we have no prognosis and no plan of care. Our best hope is to keep him as well as possible." https://t.co/zXbJbm4Hrq #UndiagnosedDay