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I cried. But it was a privilege to be able to tell the story for my daughter,
@lukebrosen daughter, and so many others like them.#RareEpilepsy#RareDisease#RareAsOnehttps://twitter.com/cziscience/status/1194380203864121344 … -
#LennoxGastaut took my child’s voice. On Nov 1, we will speak on her behalf at the first patient-focused drug development (#PFDD) meeting for DEE/LGS. Join us. End#RareEpilepsy http://lgsfoundation.org/pfdd@US_FDA@LGS_Foundation#PatientExperience#PatientVoice#ListenToPatientspic.twitter.com/EfEqc89xDz
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This is incredible! Thank you to all who are contributing to this!
@LGS_Foundation#epilepsy#rareepilepsy#DEE No-charge genetic testing for any child under the age of eight who has an unprovoked seizure.https://www.ptcommunity.com/wire/behind-seizure-program-further-expands-access-genetic-testing-children-speed-diagnosis-genetic … -
Reflecting on my great
#GeneticCounselor colleagues and the inspiring/unstoppable families I have the privilege to work with...#RareEpilepsy#FOXG1#EpilepsyAwarenessMonth#RareDiseasehttps://twitter.com/ABGCertifiedGCs/status/1194329084555227136 …
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Great to meet-up with Beverley Searle from
@Unique_charity today ...potential opportunities to have their Ring20 booklet translated into other languages...#globaloutreach#BPNA2020#rareepilepsy pic.twitter.com/nGO1tW5mQL
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Another critical yet unmet need in the treatment of
#Dravet syndrome.#RareEpilepsy https://twitter.com/curedravet/status/1106915096641654789 …
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We need more focused research on
#RareEpilepsy like hypothalamic hamartomas https://twitter.com/HopeforHH/status/976506473873260549 …
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JOIN US: Your voice as a
#RareEpilepsy loved one can help shape the future of treatment! The first patient-focused drug development (#PFDD) meeting for DEE/LGS will be webcast live on Nov 1. Join this landmark event https://www.lgsfoundation.org/pfdd#RareDisease#Epilepsy#LennoxGastautpic.twitter.com/XtmuY0Gzk0
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#Ovid CMO,@AmitR_nyc sat with Karen Utley, President and Co-Founder of the@CDKL5USA to discuss what it’s like to be a leader in the#rareepilepsy community and what matters most to families affected by#CDKL5 deficiency disorder. Click here to listen.https://apple.co/33alosm -
Patient focused drug development meeting on
#LennoxGastaut &#RareEpilepsy happening now.#PFDD#RareDisease@US_FDA@LGS_Foundation@tsalliance@dup15q@Wishes4Elliott@FamilieSCN2A@CureEpilepsy@EpilepsyFdn@curedravethttps://m.youtube.com/watch?v=rB8VCPtJRTA … -
PCDH19 Epilepsy is a
#RareEpilepsy syndrome with early onset#seizures, cognitive and sensory delays, and behavioral problems. It's caused by a change or mutation of the PCDH19 gene found on the X chromosome. About PCDH19 Epilepsy: http://bit.ly/2tfuqq0 1/2 -
RT
@TracyDixonSalaz: This meeting to inform@US_FDA on future treatments is crucial! Please resister to attend or to watch live.#PFDD#RareEpilepsy@tsalliance@dup15q@lukebrosen@winwithbrin@cziscience@CureEpilepsy@EpilepsyFdn@esnoc_unseizehttps://twitter.com/lgs_foundation/status/1183794198140444672 …
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Join the Rare Epilepsy Network (REN) registry TODAY and: Impact: Research, Diagnosis, Treatments, Find the Cause, and Lead the Cure for hypothalamic hamartomas (HH) and other rare
#epilepsy syndromes@RareEpilepsyNet@EpilepsyFdn#seizure#research#rareepilepsy pic.twitter.com/9lKIllwlv4 -
#Ring20Syndrome is an ultra rare genetic disease of which#epilepsy is usually the first sign in a child aged 6 or 7 years old. In our latest blog post,#r20 mum and co-founder of@Ring20UK shares her story.#rarediseases#rareepilepsy#epilepsyawarenesshttps://blog.epihunter.com/en/ring20 -
@ChiPubSchools@EpilepsyChicago@janicejackson how can I assure those w/ my kid at schl are trained before day 1? General seizure training is great but bc of her#RareEpilepsy and#Hemispherectomy they need “Alexis training”, which I am happy to provide.@BrainRecoveryPhttps://twitter.com/TheNotoriousEEG/status/1159838803604885505 …Prikaži ovu nit -
A story of
#hope for those with a#rareepilepsy hypothalamic hamartoma. https://twitter.com/HopeforHH/status/989208923088433153 …
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Thanks for sharing this link and all your support for
#SCN8A and#RareEpilepsy families,@TheNotoriousEEG!https://twitter.com/TheNotoriousEEG/status/1094353872473206784 …
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