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patient resources

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.

 

Bone marrow transplant resources

National Bone Marrow Donor Program’s Be the Match
World Marrow Donor Association (WMDA)

 

Genetic & rare disease resources

ARM Foundation for Cell & Gene Medicine
EURORDIS – Rare Diseases Europe
EveryLife Foundation
Genetic Alliance
Global Genes
National Organization for Rare Diseases (NORD)
Newborn Screening Adrenoleukodystrophy Advocacy Tool Kit
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.

 

ALD/CALD resources

Navigating ALD
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.

Thalassemia resources

Life with Beta-Thal
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

Association Drepagreffe
National Heart, Lung, and Blood Institute
Sickle Cell Society
Sickle Cell Warriors
SOS Globi

 

Corp-US-00048 09/20