Search results for #rarematters
Thank you Dr @rileyphil for inviting us to this exclusive post-conference dinner talk at such a beautiful venue! Very inspiring, good vibes today💫 #BSR24 #paediatrics #rheumatology #SOBI #rarematters #RareDiseases
Thanks @DiabetesNinja, great feedback and always good to remind people that #rarematters
Thanks @DiabetesNinja, great feedback and always good to remind people that #rarematters
📢 ONLY 3 DAYS AWAY! RARE Town Hall: An Open Forum for #patients, #caregivers, #providers and allies of the #RareDisease #Community 🗓️ Thu June 29 🕐 6PM (CST) 🖥️ rare-diversity-mn.eventbrite.com See you there! #togetherwecan #RAREmatters
@veve_official @Disney @Pixar What happened to Rare 👀 #RareMatters 😤
Screening newborns for inherited metabolic disease began in the UK in the 50s with the 'nappy test' for phenylketonuria. We now fall behind our European neighbours in new tests for newborn screening. #CareForRare #RareMatters #NewbornScreeningCollaborative #NBSCollab #NBS
Let’s work together to ensure those affected by rare disease in the UK are diagnosed early. This ensures symptoms can be managed effectively even if there is no cure available for the condition. #CareForRare #RareMatters #NewbornScreeningCollaborative #NBSCollab #NBS
Screening newborns for inherited metabolic disease began in the UK in the 50s with the 'nappy test' for phenylketonuria. We now fall behind our European neighbours in new tests for newborn screening. #CareForRare #RareMatters #NewbornScreeningCollaborative #NBSCollab #NBS
An estimated 3.5M people live with a rare disease in the UK and yet the average diagnosis for rare disease is between 5-9 years. #CareForRare #RareMatters #NewbornScreeningCollaborative #NBSCollab #NBS
Let’s work together to ensure those affected by rare disease in the UK are diagnosed early. This ensures symptoms can be managed effectively even if there is no cure available for the condition. #CareForRare #RareMatters #NewbornScreeningCollaborative #NBSCollab #NBS
Without treatment, PKU can damage the brain and nervous system, which can lead to learning disabilities. Let’s ensure early diagnosis is a reality for all by adding more tests to the UK newborn screen. #CareForRare #RareMatters #NewbornScreeningCollaborative #NBSCollab #NBS
An estimated 3.5M people live with a rare disease in the UK. Let’s ensure more lives are changed through newborn screening by working towards a future in which more rare conditions are added to the newborn screen. #CareForRare #RareMatters #NewbornScreeningCollaborative #NBS
The Value of Newborn Screening 👶 Jo shares their experience of learning they have OTC after their son, Arthur, was rushed to hospital at 4 days old, and how access to newborn screening could have helped. #CareForRare #RareMatters #NewbornScreeningCollaborative #NBS
"We often find that key dates such as celebrations, awareness days, or larger collaborative conferences have potential for this area…so let’s do all we can to make our message felt in these instances and more…” #CareForRare #RareMatters #NewbornScreeningCollaborative #NBS
The Newborn Screening Collaborative, a collection of 13 rare disease organisations including the MPS Society, have highlighted 3 main priorities for 2023. Find out more buff.ly/3IhwCSk #careforrare #rarematters #newbornscreeningcollaborative #nbscollab #nbs
The Newborn Screening Collaborative, a collection of 13 rare disease organisations including MLD Support Association UK, have highlighted 3 main priorities for 2023. Find out more bit.ly/3k0Rkwh #careforrare #rarematters #newbornscreeningcollaborative #nbscollab #nbs
FMI about Patient Advocacy affecting 1-10 Americans /10% of our population please follow @EveryLifeOrg | Always Believe There’s A Reason for A Season. Thankful for our own Dr. Dietz for his tireless efforts. #RareMatters June is @LDSFoundation month + #RareOnTheRoad @HCUAmerica
