On Twitter

Follow the ALD database on twitter to keep up-to-date with the latest news and other interesting facts related to ALD. Or read our latest tweets below.

Elisa Seeger founded @aidanslaw in 2012 after her son passed away from #ALD, which could have been detected by #NewbornScreening & treated. Only 11 states test for ALD even though it was added to the RUSP in 2016. “A child’s life should not depend on their zip code.” #BIO2019

Julia Jenkins of @EveryLifeOrg kicks off a panel on New Hope, Big Challenges: Newborn Screening in the Genetic Era: “There are very few ways to make a difference in a day, and #newbornscreening is one of them.” #BIO2019 #CareAboutRare

To inform health professionals in the participating provinces about the ALD newborn screening pilot that will start October 1st, we organized 2 successful and well-visited information events. We were impressed by the dedication and enthusiasm of all. @rivm @ZonMw @Stofwissel_VKS

Texas Legislature passed budget that includes funding #ALD newborn screening (#NBS) and allows for expansion of other #rarediseases like #pompe, #SMA, and #MPSI)! Bill goes to Governor. Well done #ALD advocates and stakeholders! #patientpowered #texlege #savetheboys

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Last modified | 2018-03-26