🗣️ We provided 6,000+ people living with a rare disease the opportunity to voice their opinions on 🧬 #NewbornScreening , and the results of the Rare Barometer survey are now available!
Explore the insightful and highly motivating findings
🔎lnkd.in/dqXVPC88
#Screen4Care
Join Dr. Laila Abdelwareth at the MENA Preventive Medicine Summit 2024 as she unveils the transformative journey of newborn screening: paving the way for a healthier future. 🌟
#PreventiveMedicine #NewbornScreening #HealthcareInnovation
Hope's 6th birthday book giveaway
This happy little lady is Winnie and will be the recipient of our 3rd sloth book 🦥 🤗
The thing Winnie loves best is being silly and having fun with her sister in North Carolina USA 🇺🇸 💕
#FindYourTribe
#PompeDisease #NewbornScreening
If you have a child under 16 that has been recently diagnosed with Pompe Disease, or if they are about to start treatment, message us and we will send them a furry sloth buddy of their own to keep 🦥 💙💚
#PompeDisease #FindYourTribe #NewbornScreening
Hope misunderstood Pole dancing. She thought it was a way to pay for her University. It's just as well she believes in #UseItOrLoseIt !
#PompeDisease #NewbornScreening #HopeTravels
Hope's birthday book giveaway 🦥
The 9th book goes to this young man who is Lathen jnr, and he is from Washington USA 🇺🇸
His favourite things are to play outside and to bake 🎂
#FindYourTribe
#PompeDisease #RareDisease #NewbornScreening
Hope's birthday giveaway
Our first sloth book is for little Aumrie from Kentucky 🇺🇸 who adores reading.
One of her favourites at the moment is Hurry hurry little sloth 🦥 so hopefully she will enjoy this new one too 😊 📖
#FindYourTribe
#PompeDisease #NewBornScreening
Hope's birthday giveaway
The 4th sloth book is off to a little boy called Nicola from Bari, Italy 🇮🇹 🦥
Nicola loves to play Doctor during his ERT infusions in the hospital. He looks very professional, a future Dr in the making 👨🔬
#FindYourTribe
#PompeDisease #NewbornScreening
Hope's birthday giveaway
This happy chap is George
from Minnesota USA 🇺🇸 and here he is doing his favourite things, swimming and on the swings 😊
The second sloth book is on it's way. Hope you like it 🦥 🤗
#FindYourTribe
#PompeDisease #NewbornScreening
#RareDisease
Hope's birthday giveaway
Book number 8 is going off to little Levi in Ontario, Canada 🇨🇦
He loves to draw and has made some lovely pictures for us 🤗
He also loves going on his swing and catching ladybugs 🐞
#FindYourTribe
#PompeDisease #NewbornScreening #RareDisease
DBS use is not graded in this year’s State Report Card, but information on state policies around DBS retention and use are included for information purposes. To learn more, visit rarediseases.org/policy-issues/…
#CTX #CTX Alliance #Leukodystrophy #RareDisease #NewbornScreening #2024NBS
Join us on May 16 for a workshop exploring opportunities & challenges related to implementing new technologies & data collection strategies for #NewbornScreening programs. Register: ow.ly/iVQa50RlHFI
While the FDA approval was a milestone achievement, we as a community still have one more thing to do to ensure children actually GET the treatment before symptoms begin and it's too late. That is getting MLD added to #newbornscreening . rileysroad.com/2024/05/10/why…
A National Academies committee is seeking input from anyone impacted by, or interested in, U.S. #NewbornScreening to inform a study on strengthening and modernizing these essential programs. Submit input here: ow.ly/mAzI50RlHNM
A NASEM Health committee is seeking input from anyone impacted by, or interested in, U.S. #NewbornScreening to inform a study on strengthening and modernizing these essential programs. Learn more and sign up for email updates here: ow.ly/G44n50RxlSt
PPMD, in collaboration with Muscular Dystrophy Association, EveryLife Foundation, and the Little Hercules Fdn, recently hosted a webinar on the background, history, and next steps for Duchenne #newbornscreening on both the state and federal levels. parentprojectmd.org/watch-communit…
This morning, Muscular Dystrophy Association provided an update on the #Duchenne #MuscularDystrophy #NewbornScreening nomination at the HRSA public meeting & implored the Committee to support Duchenne NBS when they vote at a later meeting.
Read our full testimony here: d3dkdvqff0zqx.cloudfront.net/groups/mda/att…