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Do you need a break?

We are pleased to introduce the Strong Wings Caregiver Respite Retreat Grant. Caring for a child with a severe Disorder of Purine Metabolism like ADSL Deficiency is a profound act of love, and one that asks everything, every day. Many caregivers go years without a moment to breathe.

​This grant is here to change that.

What is a Respite Retreat?

A respite retreat is a structured, temporary break for caregivers to rest, recharge, and find support away from their daily responsibilities. These retreats often focus on emotional renewal, community building, and personal care. 

Our Programs

We're here to help.

Fist Bump
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Hospital

Join Facebook Groups

Patient Registry

Clinical Care Packet

We have 2 Facebook groups to support families. One only supports caregivers, the other is for friends, family, doctors, and researchers. 

We partner with Rare-X to bring our patient data together collaboratively. 

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Developed with the world's largest group of ADSLD parent caregivers, this resource serves as a guideline for great clinical visits. 

 

MONTHLY ZOOM

Stay connected by joining a monthly Zoom meeting. Details can be found through our Facebook Group.

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©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).

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