Resources & News

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 […]

ALD Life Information leaflets

These leaflets cover all aspects of living with the ALD gene and are generously provided here for your information courtesy of ALD Life: Practical Information for Males with Symptomatic ALD Practical Information for Males with Asymptomatic ALD Practical Information for Men with AMN Practical Information for Women with AMN Practical Information for Female Carriers of ALD

ALDConnect Patient Portal

Join the ALD Connect Patient Portal and be part of a global effort to fight ALD/AMN. Your information can help doctors and researchers to shape the direction of research and care. For perhaps the first time in the history of this disease, your experiences, your concerns, and your ideas will take centre stage. You know first hand about Adrenoleukodystrophy. No […]