let's recode relationships
The following is a representation of organizations that offer resources and information for patients, families, and caregivers living with cerebral adrenoleukodystrophy, transfusion-dependent beta-thalassemia, and sickle cell disease. This list is provided for reference only and is not intended as a comprehensive list of resources.
Bone marrow transplant resources
Genetic & rare disease resourcesARM Foundation for Cell & Gene Medicine
EURORDIS – Rare Diseases Europe
National Organization for Rare Diseases (NORD)
The newborn screening for adrenoleukodystrophy advocacy tool kit is an empowering and educational resource created by bluebird bio in collaboration with patient advocacy organizations and advocacy leaders to raise awareness of adrenoleukodystrophy (ALD) and the life-saving opportunity newborn screening (NBS) can provide.
bluebird bio worked with ALD families to develop this informational site, which includes support and resources for building a care team and connecting with the ALD community. This website is for residents of the United States only.
Aidan Jack Seeger Foundation
Associazione Italiana Adrenoleucodistrofia Onculus
Ethan Zakes Foundation
European Leukodystrophy Association
Leukodystropy Family Forum
Leukodystrophy Research and Resource Organization
Stop ALD Foundation
United Leukodystropy Foundation
World Leukodystrophy Alliance
bluebird bio sponsors this informational site for people living with Transfusion-Dependent Beta (β)-Thalassemia (TDT) - including resources for setting goals and talking to your doctor about your medical care. This website is for residents of the United States only.
Sickle cell disease resources
An informational resource created by bluebird bio for everyone, including parents, caregivers, allies, and people living with sickle cell in all its forms. This site is intended for residents of the United States.