@tommayb911@BrianEntin I think you are right. The first reports were that she had been dropped off from church on Saturday night & then that changed to SIL drove her home from dinner &’games at Annie’s house. How tragic for all but Savannah & her brother, OMG.
Our company understands rare diseases. Almost half of the Optio staff has first hand experience battling rare diseases or caregiving for rare diseases including a rare pediatric brain tumor. Today is Rare Cancer Day.We salute all those in the medical and pharmaceutical world 1/2
There have been many updates recently in HD research. Our latest edition of our Research Video Series focuses on the recent @HDBuzzFeed article, Updates from @uniQure_NV's gene therapy. Watch this video for the article highlights. #letstalkhd
https://t.co/TOVY18CLhZ
Meet the Patient Access Liaisons (PALs), part of the dedicated team of specialists that can help Catalyst Pathways patients manage their unique challenges. https://t.co/QS8bp4ENo9
Here's an update on Executive Director, @JennaLHeilman efforts to raise funds while running a 10K!! These donations will support the scholarship fund at HDYO's FIRST IN-PERSON CONGRESS next March. Show your support today! https://t.co/2HEqH1TFbS
JULY 26: The Virtual Radcliffe Book Talks series welcomes Meghan O'Rourke, author of "The Invisible Kingdom: Reimagining Chronic Illness." Psychology professor Dr. Jonathan Adler will interview her.
https://t.co/vzA0qPQIk3 @HealthStoryCo@RadInstitute@meghanor#invisibleillness
#PatientGroups provide the emotional support after a #RareDiagnosis
They provide the understanding & medical info needed to make informed decisions about one’s health
Without patient groups, rare patients and their families would be left overwhelmed, isolated and misunderstood.
To all of our followers -- what topics would you like to see us post more about? What #RareDisease or rare disorders would you like to see more coverage of? Tell us the topics that interest you the most so we can do our best to provide relevant and timely content.
Did you know that Catalyst offers a genetic test that allows your physician to determine how quickly or slowly your body metabolizes certain medicines? Learn more: https://t.co/IAqmy0LHtu
“We want to do anything we can to help empower young people to make those decisions that are best for them.” @JennaLHeilman, HDYO Executive Director featured in @HD_Insights. @HuntingtonSG @EHDN_News https://t.co/CfnkDa942f
#BayArea#science friends - my 16yo, thoughtful, hard-working straight-A daughter living with a #raredisease is looking for summer work in #science or #medicine. Happy to #volunteer. Loves kids, science, wants to make a difference and solve problems!! Need help? Any ideas?
Valbenazine, designed to treat #chorea from Huntington's disease, recently received #OrphanDrug designation from the FDA. Learn more about this treatment and designation: https://t.co/fveXWbCcaH
#HuntingtonsDisease#RareDisease