ALDConnect rss

ALDConnect Announcements – 11.12.2015

November 13, 2015

Has your child with CCALD received an allogeneic HSCT in the last two years? If so, please ask your physician about the ALD-103 Study (Protocol), a new data collection study that is now open. The purpose of the ALD-103 Study is to better understand the safety and efficacy outcomes of the standard of care treatment… Read More ›

ALDConnect Announcements – 10.22.2015

ALD Connect 2015 Annual Meeting is up on line! Watch all presentations now and ask us questions on Monday 11.02 at 2pm EST during our annual meeting follow-up webinar. Presentations given at the ALD Connect Annual Meeting are now available for viewing on the ALD Connect website. To view items from the annual meeting Click… Read More ›

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… Read More ›

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… Read More ›

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… Read More ›

ALDConnect Doctor-Patient Webinar #5

View the Webinar: ALD Connect’s #SAVETHEBOYS Summer Campaign

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… Read More ›

ALDConnect Doctor-Patient Webinar #4

View the webinar: Newborn Screening & Implementation

ALDConnect Doctor-Patient Webinar #3

View the webinar: Genetics & Reproductive Options

ALDConnect Doctor-Patient Webinar #2

View the webinar: I Just Got Diagnosed, Now What?