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
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