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It’s not too early to begin to plan for
#RareDiseaseDay on Saturday, February 29. You can find events around the world, tell your story & access resources such as statistics on#rarediseases from@rarediseaseday at https://rarediseaseday.org/ .Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Great news for the
#CDKL5 and#raredisease community! A unique code to identify CDKL5 is important to uniformly identifying this disease across all countries and languages.https://twitter.com/CNSdrughunter/status/1221800044153753605 …
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
If you missed the update on Ovid’s OV101
#clinicalstudies STARS & NEPTUNE, presented last month at the@cureangelman#FASTSummit2019, by our President & Chief Medical Officer@AmitR_nyc, you can watch it online at https://www.facebook.com/cureangelman.org/videos/449416895951382/ ….Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
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@Child_Neurology has free resources on how to find a child#neurologist. Whether your child has been diagnosed, or you are searching for a doctor, you are not alone.https://www.childneurologyfoundation.org/patients-or-caregivers/living-neurological-condition/ …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
We're preparing for multiple clinical data readouts across our
#neurological#raredisease platform in 2020. This year is poised to be a pivotal year for#Ovid, but more importantly for the patients and families we strive to help every day. For more info: https://bit.ly/36AGnWg pic.twitter.com/3pg7XWABhO
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@RareDiseases is encouraging#patients &#caregivers to complete a brief survey on the diagnosis, care & treatment of#rarediseases in the US to compare to findings from a similar survey 30 years ago to see what has improved & what still needs work.https://rarediseases.org/nord-survey-to-better-understand-rare-disease-diagnosis-care-and-treatment-in-the-us-take-part-in-our-30-year-follow-up/ …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Free registration is open for Rare Disease Week on Capitol Hill hosted by
@RareAdvocates from February 25-28 in Washington, DC. Help your Representative & Senators understand the impact of#raredisease on your family. https://rareadvocates.org/rdw/#RareDC2020Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
As the year comes to an end, everyone here at
#Ovid would like to say THANK YOU to all of our supporters. 2020 is poised to be an exciting year for us and we can’t wait to share it with you!#happynewyearpic.twitter.com/I47kKhkoaE
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Are you interested in meeting with legislators to share how
#raredisease has impacted you & your family? Registration for Rare Disease Week on Capitol Hill opens on January 2nd. Learn more at https://rareadvocates.org/rdw/ . All#RareDC2020 events are free to patients & caregivers.Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Did you know,
#Ovid has a#podcast series, entitled#BoldMedicine? President and CMO of Ovid, Dr. Amit Rakhit moderates and chats with different guests within the#raredisease space. Click the link below to listen today! https://apple.co/2rguipy pic.twitter.com/88PM0X1bzl
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Click the link below to learn more about the
#clinicalstudies#Ovid is currently conducting in#Angelmansyndrome,#FragileX, and#RareEpilepsy. http://www.ovidrx.com/ pic.twitter.com/3feGKwfklEHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
If your child has
#Angelmansyndrome, consider participating in#Ovid’s#NEPTUNE study. Take the pre-screener to find out if your child may qualify to participate. https://angelmanstudy.com pic.twitter.com/ThHH3bBbyl
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
A message from
@jmaxlevin to the#AngelmanSyndrome patients, families, and community that we serve. On behalf of every employee at#Ovid, we wish you a joyful holiday season and a very Happy New Year.pic.twitter.com/apGUH7uO2X
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Motor and communication skills are often severely impacted by
#Angelmansyndrome, making it challenging to communicate even the most basic needs. Learn how one family is pushing forward to provide their son the freedom he deserves.https://bit.ly/2KYK4vAHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
#Ovid would like to wish the#raredisease community a#HappyHolidays!pic.twitter.com/3Titsh5pRbHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
For people living with
#Angelmansyndrome,#hyperactivity, and#anxiety are very common. Extreme emotions and over-excitement can be a struggle to manage.#Ovid is developing new medicines for families living with Angelman syndrome. We’re listening.https://bit.ly/2LZBLiRHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
We were glad to sponsor the Patient-Focused Drug Development meeting on developmental & epileptic encephalopathies including
#LennoxGastaut hosted by@LGS_Foundation last month. To hear insights from caregivers or to watch the moving opening video, visit https://www.lgsfoundation.org/pfdd .Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
An
#Angelmansyndrome diagnosis can be extremely impactful on a family, changing their future. Hear how one family is embracing each day with hope, thanks to help from their friends and local community.https://bit.ly/2vADyDpHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
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@EpilepsyFdn has education programs for elementary, middle & high schools to help students of varying ages understand#epilepsy & seizures. Help dispel myths & misunderstandings in your school with these free materials.https://bit.ly/2ZmmL81Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
A mom of children with
#autism shares what to expect when you spend time with her family during holidays. “My boys have taught me how to completely accept and love people for exactly who they are and... that is my holiday wish for all.” https://themighty.com/2019/11/holiday-celebrations-children-autism-spectrum/ … via@TheMightySite.Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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