Jesy Nelson's SMA Petition Reaches Milestone, Mandating Parliamentary Debate

A petition by Jesy Nelson asking for all babies to be tested for SMA at birth has reached 100,000 signatures. This means UK Parliament will now debate the issue.

#JesyNelson, #SMA, #NewbornScreening, #UKParliament, #Health

https://newsletter.tf/jesy-nelson-sma-petition-parliament-debate/

A petition started by singer Jesy Nelson to test all newborn babies for Spinal Muscular Atrophy (SMA) has reached over 100,000 signatures. Because of this, UK Parliament must now discuss the topic. Nelson started the petition after her twin daughters were diagnosed with the condition.

#JesyNelson, #SMA, #NewbornScreening, #UKParliament, #Health

https://newsletter.tf/jesy-nelson-sma-petition-parliament-debate/

🌍 𝗦𝗲𝗽𝘁𝗲𝗺𝗯𝗲𝗿 𝗶𝘀 𝗡𝗲𝘄𝗯𝗼𝗿𝗻 𝗦𝗰𝗿𝗲𝗲𝗻𝗶𝗻𝗴 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵! 🌟

Globally, around 140 million babies are born each year, and many countries have implemented newborn screening programs to identify serious disorders early. These screenings can prevent severe disabilities or fatalities by ensuring timely treatment.

In various regions, newborn screening has the potential to identify thousands of infants with conditions that require immediate intervention. For instance, in the European Union, approximately 1 in 1,000 babies is affected by a condition included in standard screening panels.

Organizations worldwide are working tirelessly to expand screening programs to more countries, aiming for equitable access for all newborns.

Join us in raising awareness about the importance of newborn screening and advocating for improvements in healthcare access for every child! 💚

#NewbornScreening #GlobalHealth #SaveLives #EarlyDetection #PublicHealth #ChildHealth #Advocacy #RareDiseases #FamilySupport #NBSAwareness #SCABPharmacy

Next report from the #NSPKUConference held May 2024, a juicy update on the review of the #EU Guidelines for #PKU

This session touched on #PheLevels, #NewTreatments, #NewbornScreening, #Clinic recommendations, the #Cost of PKU, and much more!

https://buff.ly/4byUGfD

#LivingWithPKU #RareDisease #phenylketonuria #PCU

RT @eurordis: The new #RareBarometer survey on newborn screening is now live!

In your opinion, what are the benefits or possible disadvantages related to newborn screening of rare diseases?

Available in 24 languages! 👉https://t.co/OI6UOVHESJ

#NewbornScreening #Diagnosis #RareDiseases https://t.co/WKhDmtA4j8

🐦🔗: https://n.respublicae.eu/EMA_News/status/1664206434865750019

The future of #NewbornScreening (NBS) is #GenomicSequencing for the early and accurate diagnosis of hundreds of #RareDiseases that if treated early can prevent early mortality & disability.

While the UK will be launching the Newborn Genomes Programme next year, many other countries around the world screen for just a handful of conditions and some others don't even have NBS programs in place. #GenomicEquity

https://www.bbc.com/news/health-63906892