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ALD Connect
ALD ConnectALD Connect
  • About Us
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    • The Myelin Project
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  • What is ALD?
    • ALD Centers and Experts
    • Newborn Screening/Asymptomatic
    • Adrenal Insufficiency
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  • Get Involved
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  • News
  • Contact Us
  • About Us
    • Mission
    • Board of Directors
    • The Myelin Project
    • Our Partners
  • What is ALD?
    • ALD Centers and Experts
    • Newborn Screening/Asymptomatic
    • Adrenal Insufficiency
    • Cerebral ALD
    • Adrenomyeloneuropathy (AMN)
    • Symptomatic Women
  • Clinical Trials & Research
    • Clinical Trials
    • Emerging Investigators
    • The Grey Zone
    • Laboratories
    • Publications
  • Resources
    • Annual Meetings and Patient Learning Academies
    • EL-PFDD
    • Financial Assistance
    • Frequently Asked Questions
    • Peer Mentor Program
    • Webinars
  • Get Involved
    • Advocate
    • ALD Landscape Project
    • Community Calendar
    • Community Calls
    • Community Directory
  • News
  • Contact Us

2019 Annual Meeting Registration

UncategorizedBy Sarah RuschJune 4, 2019

2019 Annual Meeting Registration Register now for our 2019 Annual Meeting & Patient Learning Academy. Registration will close on October 1st, 2019. Limited financial assistance is available for travel and other costs.…

2018 Annual Meeting

UncategorizedBy Sarah RuschOctober 2, 2018

2018 Annual Meeting   ALD Connect 2018 Annual Meeting & Patient Learning Academy Videos 2018 Patient Learning Academy Videos 2018 Annual Meeting Videos Day 1: ALD Connect Consortium Annual Meeting…

Tanay and his family find hope for ALD with Gene Therapy trial

UncategorizedBy Sarah RuschSeptember 14, 2018

Tanay and his family find hope for ALD with Gene Therapy trial Tanay Suri and his family traveled halfway around the world for a groundbreaking adrenoleukodystrophy (ALD) treatment at University…

ALD Comprehensive Clinic Expands to Help More Adrenoleukodystrophy Patients and Families

UncategorizedBy Sarah RuschSeptember 7, 2018

ALD Comprehensive Clinic Expands to Help More Adrenoleukodystrophy Patients and Families Our center at University of Minnesota Masonic Children’s Hospital has decades of experience treating adrenoleukodystrophy. Now we’re expanding our…

Recommended Uniform Screening Panel (RUSP)

UncategorizedBy Sarah RuschFebruary 9, 2018

ALD was added to the Recommended Uniform Screening Panel (RUSP), a federal list of all genetic diseases recommended for state newborn screening (NBS) programs, in February 2016. However, at this…

ALD Connect SCOUT program

UncategorizedBy Sarah RuschFebruary 9, 2018

ALD Connect SCOUT program With the creation of the NBS SCOUT Initiative (Supportive Community Outreach & Understanding Together), ALD Connect will draw upon the experience of previously-diagnosed ALD families and…

Parents’ vigilance gives son a fighting chance against Adrenoleukodystrophy

UncategorizedBy Sarah RuschAugust 27, 2017

Parents’ vigilance gives son a fighting chance against Adrenoleukodystrophy 12-year-old Nicholas Purschke plans to run a triathlon this year, a feat that wouldn’t be possible if early screening hadn’t found…

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