Top Tweets for #rusp
NORD is encouraged by @HRSAgov's announcement of a National #NewbornScreening Workgroup to continue making additions to the Recommended Uniform Screening Panel (#RUSP), work previously conducted by the Advisory Committee on Heritable Disorders in Newborns and Children.
Early detection of #RareDiseases saves lives, so a national #NBS program is vital to the #RareDisease community. Read our statement on this news: https://t.co/3C49GUUuzT
Exciting news for the #Duchenne #MuscularDystrophy and #MLD communities, and everyone committed to robust #NewbornScreening across America.
NORD applauds #HHS for adding these two rare disorders to the #RUSP so babies with these conditions receive earlier diagnoses and life-saving medical interventions.
Read more: https://t.co/CKxUtTahOE
🎉 Exciting Newborn Screening Update! Today we are celebrating a life-saving advancement!
The @HHSGov has added Duchenne muscular dystrophy (#Duchenne) and Metachromatic Leukodystrophy (#MLD) to the federal Recommended Uniform Screening Panel (#RUSP).
This is a significant milestone for public health, opening the door to more timely interventions and optimized health outcomes for children affected by these rare diseases.
In response to the #ACHDNC dissolution, ACMG is organizing a new advisory framework for #newbornscreening, starting with a virtual stakeholder roundtable this summer. Outreach to key groups begins soon. More to come. https://t.co/NBMFrN8QBj #MedicalGenetics #RUSP #PublicHealth
The sudden termination of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) by #HHS halts critical progress in adding treatable rare diseases to the Recommended Uniform Screening Panel (#RUSP). This expert committee has played a vital role in ensuring that life-saving diagnoses and treatments are available to all children – regardless of the state they’re born in.
Without this expert guidance, progress on the RUSP is now uncertain, including a scheduled May 9 vote to consider adding two treatable rare diseases: #MetachromaticLeukodystrophy (#MLD) and #Duchenne #MuscularDystrophy (#DMD). Together, their inclusion could help save lives and change health outcomes for the better for an estimated 400–450 newborns each year.
At #NORD, we’re raising our voice and standing ready to work alongside government leaders to protect and reinstate the vital work of the #ACHDNC. A healthier America begins at birth—with advancements in #NewbornScreening so no child goes undiagnosed, and no family faces the devastation of a treatable #RareDisease that could have been caught early.
https://t.co/mwm7C7486I
"This is an absolutely essential committee for the life of America's babies. It's an incredible #PublicHealth protection, and to lose it is heartbreaking. People are shocked and frightened by it."
#HHS must reinstate the #ACHDNC. #NewbornScreening #RUSP
https://t.co/ztsTab0cTe
Le Directeur Général de la CDC rencontre les organisations de défense des consommateurs : Le dossier SN La Poste Sénégal au cœur des échanges.
#Cdcsénégal #Snlaposte #uncs #ascosen #RUSP
https://t.co/9i3lktmxwd
Please join us as we host our first Town Hall meeting on the importance of Newborn Screening for #BiliaryAtresia!
Meeting Details:
When: 10/24/24 6PM Central Time
Registration Link: https://t.co/ylavewaNp5
#NBS #RUSP #ACHDNC #HRSA #advocacy #savethechildren
Please join us as we host our first Town Hall meeting on the importance of Newborn Screening for #BiliaryAtresia!
Meeting Details:
When: 10/24/24 6PM Central Time
Registration Link: https://t.co/ODXbBy95ug
#NBS #RUSP #ACHDNC #HRSA #advocacy #savethechildren
Good news in #Tennessee: New laws allow Medicaid to cover genetic testing expenses for kids with rare diseases AND mandate that diseases added to the Recommended Uniform Screening Panel (#RUSP) be required in all #NewbornScreening within 3 years. #TNpol https://t.co/r19RJ93N9L
La información del #RUSP es compartida y opera de manera paralela con otros sistemas informáticos, tales como:
✅#DeclaraNet y OMEXT, vinculados con la declaración de situación patrimonial y de intereses
✅El Sistema de Entrega-Recepción y Rendición Cuentas
✅#NóminaTransparente
Right now, Dr. Ned Calonge is providing the #APHLNBS attendees with an overview of the process the #ACHDNC goes through to review conditions and add them to the #RUSP and the committee's future plans for condition recommendations. #NBS60Years #2023NBS
It's #NewbornScreeningAwarness Month
That pesky #RUSP I tell ya...
Listen to hear my take:
https://t.co/2DMTHA4lCy
So proud of the diverse rare disease groups and their impassioned advocates that worked together to make this happen. Happy to have given testimony with others & inspired by their testimonies. We did it!
#Rusp #EarlyDiagnosis #MPS #TexasChildren #NewbornScreenings
Texas advocates, your voices were heard!
Governor @GregAbbott_TX signed House Bill 2478 into law, making #Texas the 11th state to pass Recommended Uniform Screening Panel (RUSP) Legislation! Read more here: https://t.co/xafJE35Ure #newbornscreening #RUSP
The process for nominating a disease to be added to the #RUSP in the US is rigorous. The recent rejected nomination for #KrabbeDisease sent shockwaves through the #RareDisease community and has made many orgs rethink their approach to #NewbornScreening. https://t.co/MQ54L4cU7Q
Texas advocates, your voices were heard!
Governor @GregAbbott_TX signed House Bill 2478 into law, making #Texas the 11th state to pass Recommended Uniform Screening Panel (RUSP) Legislation! Read more here: https://t.co/xafJE35Ure #newbornscreening #RUSP
As one of the few universal #PublicHealth programmes in the US, #NewbornScreening (#NBS) should provide an equitable standard of care across the country. However, state-wide health disparities exist in the way the programme is run.
https://t.co/NSUS6VKEnZ #RareDisease #RUSP
BREAKING NEWS in #NewbornScreening for #homocystinuria!!! 🗞️
➡️Learn more about this exciting breakthrough!
https://t.co/gyxtrEp07B
https://t.co/Eg1kNMipPj
#homocystinuria #NewbornScreening #RUSP #biomarkers #massspectrometry #clinicalchemistry #HCU #HopeConnectsUs
URGENT MESSAGE! PLEASE SHARE!
Help us save children's lives! Join us in asking @SecBecerra to add #KrabbeDisease to the #RUSP.
Take Action:
https://t.co/1JVMK5dPYh
Last Seen Hashtags on Sotwe
ebonybj
Seen from Singapore
teenageee()()()()()()()()()()()()()()()()********* +filter:videos
Seen from United States
Kayseriesc
Seen from Turkey
แอบถ่ายในห้องน้ำ
Seen from Thailand
wrinkledsoles
Seen from United States
momsonn
Seen from United Kingdom
minichat
Seen from Ecuador
monkeyapp()()()()
Seen from United States
minichat((((((()))))))* filter:native_video
Seen from United States
Trends for you
Most Popular Users
Elon Musk 
@elonmusk
241.7M followers
Barack Obama
@barackobama
119M followers
Cristiano Ronaldo
@cristiano
114.4M followers
Donald J. Trump
@realdonaldtrump
111.9M followers
Narendra Modi
@narendramodi
107.2M followers
Rihanna
@rihanna
98.7M followers
NASA
@nasa
92.4M followers
Justin Bieber
@justinbieber
91.8M followers
KATY PERRY
@katyperry
90M followers
Taylor Swift
@taylorswift13
83.9M followers
Lady Gaga
@ladygaga
75.4M followers
Virat Kohli
@imvkohli
73.3M followers
Kim Kardashian
@kimkardashian
70.9M followers
YouTube
@youtube
68.8M followers
Neymar Jr
@neymarjr
66.3M followers
Bill Gates
@billgates
65.1M followers
Selena Gomez
@selenagomez
63M followers
The Ellen Show
@theellenshow
62.3M followers
CNN
@cnn
61.8M followers
X
@x
60.7M followers