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What is ALD?
About Us
Clinical Trials & Research
Resources
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News
Contact Us

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RECENT COMMENTS

RECENT POSTS

SwanBio Therapeutics Announces New Preclinical Data Demonstrating Proof of Principle for SBT101 Gene Therapy as a Potential Treatment of Adrenomyeloneuropathy
October 20, 2021
Minoryx Therapeutics: Open Label Extension
October 14, 2021
Introducing our new Peer Mentors
October 8, 2021
Statement from the ALD Connect Board of Directors
August 10, 2021

Contact Us

Call Us
(833) 525-3266
Mail
[email protected]
Address
ALD Connect
35 Village Road Suite 100 #353306
Middleton, MA 01949, USA

Latest News

SwanBio Therapeutics Announces New Preclinical Data Demonstrating Proof of Principle for SBT101 Gene Therapy as a Potential Treatment of Adrenomyeloneuropathy
October 20, 2021
Minoryx Therapeutics: Open Label Extension
October 14, 2021
Introducing our new Peer Mentors
October 8, 2021
Statement from the ALD Connect Board of Directors
August 10, 2021

Instagram

Thank you to Michael’s family for making this pr

Thank you to Michael’s family for making this program possible! We were able to help a family with airfare so they can travel to an appointment. Send us a DM if you are interested in applying for a grant.

@chapman.patti @gbents

@dr_troy_lund from the University of Minnesota wil

@dr_troy_lund from the University of Minnesota will present a research update about brain engraftment at our 2021 Annual Meeting and Patient Learning Academy.

The link to register is in our bio!

*Please note that the program is subject to change.

We are thrilled to introduce you to Dr. Ezzat Hash

We are thrilled to introduce you to Dr. Ezzat Hashemi. Dr. Hashemi obtained her Ph.D. in integrative pathobiology from the University of California Davis. In Dr. Martinez-Cerdeno's lab, she studied the development of the human cerebral cortex and neurodevelopmental disorders. Her thesis focused on the role of cortical interneurons in autism. Dr. Hashemi joined Dr. Han's lab at Stanford for her postdoctoral work where she studied S1P1 signaling in CNS cells during demyelination and repair. She also studied the role of pericytes in blood brain integrity and de-remyelination.

Dr. Hashemi joined Dr. Keith Van Haren's lab in September 2020. She is interested in understanding the molecular mechanisms underlying impaired lipid metabolism, neuroinflammation, and neurodegeneration in adrenoleukodystrophy (ALD). Dr. Hashemi is developing an animal model for ALD to explore the role of fatty acid metabolism on neurovascular unit and neurodegeneration.

Please register for our 2021 Annual Meeting and Patient Learning Academy! The link to register is in our bio.

*Please note that the program is subject to change.

Dr. Stephan Kemp will welcome the community to our

Dr. Stephan Kemp will welcome the community to our 2021 Annual Meeting and Patient Learning Academy this year! We are excited to hear updates on ALD and AMN! @team_ald

The link to register is in our bio!

*Please note that the program is subject to change.

One of the highlights of our 2021 Annual Meeting a

One of the highlights of our 2021 Annual Meeting and Patient Learning Academy will be our breakout sessions! There will be two separate times during the day on Saturday, November 13th for you to meet other community members and ask our ALD experts questions. These sessions will not be recorded, and you must be registered in order to join them!

The link to register is in our bio!

We are excited to partner with a genetic counselin

We are excited to partner with a genetic counseling student at the University of Nebraska Medical Center who is conducting a research study to better understand the experience of navigating payment and insurance coverage for medical costs associated with a rare disease diagnosis.

Please take a moment to complete this anonymous survey which will ask about your rare disease diagnosis, your experience with health insurance coverage, and your awareness of financial resources for rare disease diagnoses. The survey will take approximately 15-20 minutes to complete.

The link is in our bio!

#adrenoleukodystrophy #ald #adrenomyeloneuropathy #amn #newbornscreening #nbs #womenwithald #raredisease

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