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YOU ARE  NOT ALONE.
Together we will turn the corner on ADLD.
Although ADLD is very rare, there are estimated to be thousands of ADLD patients worldwide.  We created the ADLD Center in part so that we can all unite and fight together! Collectively, we will be able to catalyze change by sharing our knowledge and experiences, as well as by advocating for research and therapies.
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ADLD HANDBOOK
WHAT WE DO
Towards a cure for ADLD

The ADLD Center is focused on raising awareness about Autosomal Dominant Leukodystrophy (ADLD) and developing a network of clinicians, researchers, patients and their caregivers/advocates in order to raise funds as we move forward towards finding a cure.

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Research

We facilitate basic and translational research in order to understand ADLD better and find effective treatments

Clinical

We are creating a network of physicians and health professionals who have relevant expertise and can provide effective care

Patients

We aim to grow as a community and be an information resource for patients and their families around all things ADLD

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Support us

Give today to support our work towards making a difference in the lives of ADLD patients and their caregivers.
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Download the ADLD HANDBOOK

Explore our new ADLD Handbook - your complete guide to understanding, managing, and finding support for ADLD.
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Top Stories

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A Look At The Latest Development From ADLD Center
April 20, 2023
A Look At The Latest Development From ADLD Center

The Clinical Consortium for ADLD, a group dedicated to improving care for patients with this rare neurodegenerative disease, has been…

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Patient Advocacy Internship
February 15, 2023
Patient Advocacy Internship

Patient Advocacy Internship: The center engaged a genetic counseling graduate student for an 8-week internship in partnership with the University of…

2023 Goals
New Heights in 2023: ADLD Center Reveals Ambitious Roadmap
February 2, 2023
New Heights in 2023: ADLD Center Reveals Ambitious Roadmap

Over the past year, we’ve made real progress through advancing research and building clinical partnerships to bring us closer to…

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Join the Giving Tuesday Movement – Support ADLD Patients by Donating
January 8, 2023
Join the Giving Tuesday Movement – Support ADLD Patients by Donating

The latest from the ADLD Center and launching our first GivingTuesday campaign! Donate to our cause today Your support and…

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Research Grants with the Orphan Disease Center
January 5, 2023
Research Grants with the Orphan Disease Center

Pilot Research Grants in partnership with a fellow non-profit org, the Orphan Disease Center at the University of Pennsylvania. The ODC received several full applications with many exciting ideas to advance the science of, and the therapeutic potential for ADLD. We are developing a focused funding opportunity to help meet the needs of our research community. The two $50,000 grants will be awarded to suitable research team(s) in Q2 2023.

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Ask A Clinician Webinar
December 22, 2022
Ask A Clinician Webinar

Watch our webinar A lot of questions from the community were answered during the “Ask a Clinician” webinar in December…