ALD Connect

CLINICAL UPDATES ON NEWBORN SCREENING AND DISEASE MONITORING IN ADRENOLEUKODYSTROPHY

ADRENOLEUKODYSTROPHY (ALD) WEBINAR SERIES NSGC, in partnership with PRIME Education and the ALD Alliance, is excited to offer a series of upcoming webinars focused on Adrenoleukodystrophy (ALD). Each live webinar will be offered twice on two different dates. Attendees can earn 0.5 hours of CME/CE for each webinar. Clinical Updates on Newborn Screening and Disease … Continued

2020 ALD Connect Annual Meeting and Patient Learning Academy

Join us on November 13 and 14, 2020 for our virtual ALD Connect Annual Meeting and Patient Learning Academy! Registration is required in order to receive Zoom links and post-meeting materials. Registration is free for patients and caregivers. Click here to register. Our main conference page is here! 2020 ALD Connect Annual Meeting and Patient … Continued

MRI Webinar

December 9, 2020 at 12 PM EST Register here: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehfpzwin23786c5b We know that MRIs are a very stressful time for ALD families. Please join us to hear from our panel about what to expect during these appointments. Katie Weagle, MS, CCLS Child Life Specialist Shannon Kennedy, BSN, RN Interventional Radiology Nurse Lindsay Guidoboni, RT(R)(MR) BS … Continued

Community Call: AMN Men

Please join us for a community call facilitated by Tim Maguire, Ken Dieffenbach, and Justin D’Agostino on Tuesday, December 22nd at 7 PM EST for AMN men. Please reach out to [email protected] if you have any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehgl3sze77c4718e **NOTE: Please do not register for this call unless you are … Continued

Community Call: Symptomatic Women

Please join us for a community call on Monday, December 28 at 7 PM EST for symptomatic women facilitated by Kathleen O'Sullivan-Fortin and Janis Sherwood. Please reach out to [email protected] if you have any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehgl3t0v1ca8a33a **NOTE: Please do not register for this call unless you are a patient … Continued

Community Call: Newborn Screening, Young Families, Parents of Asymptomatic Children

Please join us for a community call facilitated by Tara Meady, Suzanne Flynn, and Kathleen O’Sullivan Fortin on Wednesday, December 30 at 7:30 PM EST for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] if you have any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehgl3t37d4665278 **NOTE: Please do … Continued