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.

Test All Babies for ALD - Vote Yes on Aidan’s Law - Sign the Petition! via @Change

We are hiring an Executive Director to future our mission of #ALD advocacy, working with our #pharma partners, and engaging and educating all stakeholders in pursuit of an ALD and #AMN cure. Full post: Please share widely. #patientpowered #raredisease

ED Job Posting 2_13_19.pdf

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Dutch researchers recently published this excellent study on the rate of disease progression in females with the #ALD gene. The paper helps to explain why there is such difficulty including females in clinical trials due to the slow progress of symptoms:

Disease progression in women with X-linked adrenoleukodystrophy is slow

Over 80% of women with X-linked adrenoleukodystrophy (ALD) develop spinal cord disease in adulthood for which treatment is supportive only. For future...

ojrd.biomedcentral.com

#ALD diagnosis can be challenging as plasma VLCFA levels are normal in 15% of ALD women. Using a semi-targeted lipidomics approach we identified possible new diagnostic biomarkers. #lipidomics #OpenAccess https://t.co/tcPXwlOuOt

8 yr follow-up of women with #ALD shows progression on current outcome measures is slow making clinical trials not feasible. We will invest in the identification of new clinical outcome measures enabling women to participate in clinical trials. #OpenAccess https://t.co/tcPXwlOuOt

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Last modified | 2018-03-26