REGISTRATION FOR THE 8TH ANNUAL ALD STANDARDS OF CARE CONFERENCE IS NOW OPEN:

NEWBORN SCREENING ROUNDTABLE (NBS PROGRAMS ONLY): MARCH 20, 2024
STANDARDS OF CARE CONFERENCE: MARCH 21 & 22, 2024
ALD FAMILY BREAKFAST & GATHERING: MARCH 23, 2024
​

To reserve your room at The Ace Hotel,
​please use the ALD Alliance booking link to receive the group rate.

Ideas for our agenda?  Let us know!

---

Virtual Town Hall: Gene Therapy for childhood cALD

​The FDA approved bluebird bio’s gene therapy on September 16, 2022. Gene therapy is a treatment option for some children with cerebral ALD that offers an additional option to allogenic hematopoietic stem cell transplant.

bluebird bio's gene therapy treatment is now commercially available at designated treatment centers in the United States.  The first patient to receive the treatment since FDA approval received the therapy in March 2023.  The ALD Alliance hosted this second virtual town hall in July 2023 to hear from clinicians about their experience with gene therapy, and from bluebird bio to learn where gene therapy is being offered, and the process for safety monitoring and data sharing following FDA approval.  
​

---

ALD Standards of Care Conference & Newborn Screening Program/Lab Consortium

The ALD Alliance hosts an annual ALD Standards of Care Conference.  Thanks to all who joined in-person and virtually for our 7th annual meeting in March 2023.  

7th Annual ALD Standards of Care Conference Playlist

Quarterly consortiums are held virtually for newborn screening labs and programs.  Please see the 2023 dates below.  

Thank you to our 2023 Conference Sponsors:
​

---