Care Beyond Diagnosis

Care Beyond Diagnosis supports patients, families, and communities after a rare disorder diagnosis through innovative and unique programs.

[Jonathan Cooper @Batten_PSDL]

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

[Care Beyond Diagnosis @Carebeyondd]

Thank you, @bionewsservices' Batten Disease news for their excellent coverage on the CLN2 Clinical Guidelines. https://t.co/kj2BeCEd1M

[Del Monte Institute for Neuroscience @URNeuroscience]

#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 https://t.co/ckrM9Y3pjl

[CoufeteryComms @coufetery]

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

[Global Genes @GlobalGenes]

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

[Rare Disease Ghana Initiative @RareDiseaseGh]

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.

[FYMCA Medical Ltd @FymcaMedical]

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

[FYMCA Medical Ltd @FymcaMedical]

@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

[Rare Disease Ghana Initiative @RareDiseaseGh]

#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

[Care Beyond Diagnosis @Carebeyondd]

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 Medical Ltd @FymcaMedical]

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

[Care Beyond Diagnosis @Carebeyondd]

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

[FYMCA Medical Ltd @FymcaMedical]

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

[Rare Disease Ghana Initiative @RareDiseaseGh]

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

[FYMCA Medical Ltd @FymcaMedical]

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

[Care Beyond Diagnosis @Carebeyondd]

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

[International Gaucher Alliance @IGAgaucher]

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 🇲🇦🇲🇦

[The Mighty @TheMightySite]

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

[Global Genes @GlobalGenes]

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

[Care Beyond Diagnosis @Carebeyondd]

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