Resources & News

Nursing Research Topics

Nursing Research Topics

Starting quilters need just a few items that are basic to begin with. Like the majority of interests, quilting has you to be tempted by an unlimited array of products. Get the following basic supplies were create with all by yourself. your quilting type grows and as your capabilities enhance, you can add for your device cache. Machine: there is […]

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 […]

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 […]