About Us
Mission and Vision
Staff and Board of Directors
Our Partners
What is ALD?
Newborn Screening / Asymptomatic
Adrenal Insufficiency
Cerebral ALD
Adrenomyeloneuropathy (AMN)
Symptomatic Women
Clinical Trials & Research
Clinical Trials
Emerging Investigators
The Grey Zone
Resources
Externally-Led Patient-Focused Drug Development (EL-PFDD)
Financial Assistance
Frequently Asked Questions
Mental Health
Peer Mentor Program
Webinars
Other Resources
Get Involved
ALD Landscape Project
Annual Meeting and Patient Learning Academy
Community Calendar
Community Calls
ALD Family Weekend
Industry Advisory Council
Patient-Led Planning Committee
News
Contact Us
Donate
Home
»
Get Involved
»
Annual Meeting and Patient Learning Academy
»
ALD Connect Annual Meeting & Patient Learning Academy 2017
ALD Connect Annual Meeting & Patient Learning Academy 2017
View video recordings from the 2017 ALD Connect Annual Meeting & Patient Learning Academy.
ALD Connect Annual Meeting 2017
Welcome: Introductions and Goals for 2017 Annual Meeting (Ali Fatemi)
The Therapeutic Landscape of ALD and AMN (Florian Eichler)
Clinical Trial Readiness for Rare Neurological Diseases: FDA and NIH Perspective (Devanand Jillapalli (FDA) and Jill Morris (NIH)
The ALD Database and the Need for Translational Metabolism in Newborn Screening (Stephan Kemp)
Newborn Screening for ALD (Ann Moser and Elisa Seeger)
2017 ALD Connect Awards (Kailey Walsh)
Industry Panel: Updates on Trial Plans
Outreach and Advocacy for ALD (Jean Kelly)
Learning from Others: Patient Engagement Across Rare Disease (Ronald Bartek and Margie Frazier)
Group Brainstorm and Wish List for 2018 (Ben Lenail)
Patient Learning Academy 2017
<p style=”text-align: left;”>November 17th and 18th, 2017 – Bethesda, MD</p>
Progress, Clinical Trials, and Industry Recap (Florian Eichler)
Cellular Therapy for Cerebral ALD (Christine Duncan)
ALD & AMN Patient Experiences (Ben Lenail)
Physical Therapy and the Benefits of Exercise (Jennifer Keller and Christopher Joseph)
Advancing Quality of Life for Advanced Cerebral AMN (Bob Wyborn)
Taking Care of a Newborn With ALD (Tara Meady)
Data Sharing: The Patient’s Voice Makes A Difference (Alex Sherman)
Fighting the Odds, Transformative Patient Experiences (Kyle Bryant)
Young ALD Carriers (Taylor Kane)
Endocrine Issues and Their Management in ALD/AMN (Aniket Sidhaye)
Closing Remarks (Kathleen O’Sullivan-Fortin)
Useful Links
Annual Meeting and Patient Learning Academy
ALD Connect Annual Meeting & Patient Learning Academy 2022
ALD Connect Annual Meeting & Patient Learning Academy 2020
