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ALD Connect

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

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

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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

Poxel Announces its Participation at Upcoming Scientific Conferences Related to Adrenoleukodystrophy (ALD)
October 25, 2021
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

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Roberto is a Ph.D. student who works with Dr. Step

Roberto is a Ph.D. student who works with Dr. Stephan Kemp on modeling ALD in vitro using iPSCs. Roberto will present at our 2021 Annual Meeting and Patient Learning Academy on Friday, November 12. @team_ald

Register using the link in our bio!

*Please note that the program is subject to change.

We are looking forward to this endocrinology sessi

We are looking forward to this endocrinology session! Please send us any questions you have for our experts, Dr. Nicholas Tritos and Dr. Molly Regelmann. They will present at our 2021 Annual Meeting and Patient Learning Academy on Saturday, November 13.

Register using the link in our bio!

*Please note that the program is subject to change.

Dr. Florian Eichler will present about Pain, Disco

Dr. Florian Eichler will present about Pain, Discomfort and Sensory Changes in ALD at our 2021 Annual Meeting and Patient Learning Academy on Saturday, November 13.

Please comment below with any questions you have for Dr. Eichler, and be sure to register using the link in our bio.

*Please note that the program is subject to change.

Dr. Lotfi Merabet is a clinician-scientist investi

Dr. Lotfi Merabet is a clinician-scientist investigating how the brain adapts to visual impairment. He completed his doctorate degree in neuroscience (University of Montréal) and clinical doctorate in optometry (New England College of Optometry). He then continued his post-doctoral training at Harvard Medical School, Boston University, and the MGH Martinos Center for Biomedical Imaging. This was followed by a Master’s degree in Public Health (Harvard). In 2010, he joined the clinical and research faculty of the Massachusetts Eye and Ear and his work is currently supported by the NIH/National Eye Institute. He also serves on the Education and CVI Steering Committees of the Perkins School for the Blind, and is a member of the Board of Trustees for the Carroll Center for the Blind and the National Braille Press.

Melissa is a Clinical Research Coordinator who works with Dr. Florian Eichler at Massachusetts General Hospital. She is the primary research coordinator for the bluebird bio gene therapy trials and runs virtual reality testing for patients in the MGH Leukodystrophy Clinic.

The link to register is in our bio!

*Please note that the program is subject to change.

How do you live your best life with ALD? What str

How do you live your best life with ALD?

What strategies do you use to manage your symptoms and feel your best?
Do you have active friendships and relationships?
Do you participate in rewarding social activities?
As caregivers, how do you enhance your resilience, manage stress, and strengthen your coping skills?
Do you advocate and support other community members?

Please take a moment to think about these questions and answer in the comments below. Our Board of Directors will use this information to help develop goals for 2022.

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

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