Care Beyond Diagnosis

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

Thank you, @bionewsservices' Batten Disease news for their excellent coverage on the CLN2 Clinical Guidelines. battendiseasenews.com/2021/05/27/new…

#URochesterResearch by Dr. Jonathan Mink #BattenDisease #RareDisease @UofR @UR_Med #IDDRC Guidelines on the diagnosis, clinical assessments, treatment and management for CLN2 disease patients Paper via @ojrarediseases ojrd.biomedcentral.com/articles/10.11…

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 ojrd.biomedcentral.com/articles/10.11…

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. globalgenes.org/2019/09/18/fig… #raredisease #careaboutrare #2019GGSUMMIT

We have been actively involved in the #AfricanTaskforce, a joint venture between @FymcaMedical and @Carebeyondd where we highlight the passion all those involved and hope to see change in the care of #raredisease patients in #Africa.

So excited to see the progress we have made so far in such a short time with the African Taskforce, our joint venture with @Carebeyondd , 300 contributions from 18 countries #FYMCAMEDICAL #Rarediseaseeducation #Raredisease #dazzle4rare

@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!!! 👇 Added partners around the world ✅ 👇 ‼️We still need your help‼️ 👇 Can we quadruple our numbers!?? 🤔 Don't tell me we can't. 🤨 We ARE #StrongerTogether! 💪 #Dazzle4rare

C.B.D and @FymcaMedical are excited to have launched an African task force. Working to identify problems unique to Africa which limits the care of rare disease patients @Within3 @IGAgaucher @RareDiseaseGh @RarediseasesSA @GenAllianceSA @RareDiseaseKE @irdirc @raddafoundation

FYMCA and @Carebeyondd are excited to launch an African task force on the 15th Aug. Working to identify problems unique to Africa which limits the care of rare disease patients @Within3 @IGAgaucher @RareDiseaseGh @RarediseasesSA @GenAllianceSA @RareDiseaseKE @irdirc

Loved spending time with @RareDiseaseGh and @IGAgaucher. Sad to see this event coming to an end. #raredisease #workingtogether

Day #2 Morocco 2019: We are embracing the digital age with a session dedicated to Digital Health #FYMCARABAT19 #rarediseaseeducation

Our team is in #Rabat to join in the training on #Metabolicdisorders organized by @FymcaMedical with support from @Carebeyondd to build capacity for #rarediseases in #Africa. We are glad to meet delegates from other African countries. #Care4Rare

Thank you CBD for making this possible with our other partners.

Morocco, day 1!! After crazy journeys made by both faculty and delegates, everyone is ready to start the event!! #rarediseaseeducation #rare #raredisease

Our CEO, @tanyahisted is travelling to Morocco to join this meeting... updates to follow on this exciting event being organised by @FymcaMedical and @Carebeyondd #rarediseaseeducation #FYMCARABAR19 #togetherwearestronger 🇲🇦🇲🇦

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." ow.ly/N2js30nfFoA #UndiagnosedDay

We have absolutely loved seeing all the #RareDiseasesDay posts from around the world today. Continue being #rareandproud !!!