top of page
Search

Rediscovering ADSLD, Recording 1, A Year in Review

rarebirdsadsl
Oct 27, 2025
1 min read

Updated: Oct 28, 2025



In this video, Nicole Lytle provides an impact report for Rare Birds Foundation's second year, highlighting their mission to support families with ADSLD and related purine disorders. She discusses hitting a milestone of 200 documented patients, introduces board members, and highlights various initiatives including research partnerships, the development of a Clinical Care Guide, and educational resources to “Explain ADSLD to a Kid.” Nicole also announces plans for a dedicated RBF online platform, Clinician Consortium, and plans for a Development Committee to further their financial impact.


 
 
 

Recent Posts

See All
Gene Therapy Update 8/21/26

Hi families! Our last update came in May during our family meeting with Dr. Xin Chen at UTSW when we learned that his early results are very promising and he now has the treatment in the bodies of mic

 
 
 
ADSLD Gene Therapy Community Update June 22, 2026

We wanted to share a summary of recent discussions about ADSL research, our fundraising efforts, and the path toward future treatments. Our goal is to keep families informed about where we are today,

 
 
 

Comments

©2025 by Rare Birds Foundation. 

Disclosure:

This site is intended to provide basic educational information about Adenylosuccinate Lyase Deficiency Disorder (ADSLD). It is not intended to, nor does it, constitute medical or other advice. Readers are warned not to take any action regarding medical treatment or otherwise based on the information on this website without first consulting a physician.

 

The information contained in this site is intended for your general education and information only and not for use in pursuing any treatment or course of action. Ultimately, the course of action in treating a given patient must be individualized after a thorough discussion with the patient’s physician(s).

bottom of page