ALDConnect One Page Summaries

What is ALD? How is ALD inherited? Symptoms of ALD/AMN What Can I do to Stay Healthy? Current Treatments for ALD What is ALD? ALD stands for Adrenoleukodystrophy This combined word is made up from – Adreno – Leuko – Dystrophy Adreno refers to the Adrenal Glands which are found on the top of each of our kidneys Leuko is […]

ALDConnect Announcements – 9.16.2015

Early registration for the ALD Connect Annual Meeting ends TODAY! Where? Wyndham Boston Beacon Hill Hotel 5 Blossom Street, Boston MA 02114 Meeting Agenda Patient Hotel Scholarship Patient Travel Scholarship *Registration fees will increase starting September 17th, 2015. REGISTER FOR THE MEETING HERE To book your discounted hotel room please call 617-724-7630 and reference ‘ALD Connect’ for the discounted price […]

ALD Hearing on 8.27.2015

The ALD patient and physician community has advocated for years to get ALD added to the Recommended Uniform Screening Panel (RUSP). RUSP is the list of diseases that the federal government (through the Secretary of Health) recommend that all states test newborns for. The latest nomination to add ALD to the RUSP was September 2012 when the community was told […]