ALD Connect

Other Resources

There are numerous other organizations dedicated to supporting ALD patients and their families, each offering valuable resources and assistance. We encourage patients and families to explore these organizations and engage with their services. By connecting with these groups, you can access a wider range of support, gain new insights, and become part of a broader community committed to improving the lives of those affected by ALD. Your involvement can provide additional support and strengthen the network of resources available to help navigate the challenges of ALD.

Angel Flight

Angel Flight is an organization dedicated to providing free air transportation for patients and their families who need to travel for medical treatment. Through a network of volunteer pilots and aircraft, Angel Flight ensures that individuals facing serious health conditions can reach the care they need without the burden of travel costs. This service is especially crucial for those who live far from specialized medical facilities or face financial challenges. By removing transportation barriers, Angel Flight helps ease the journey for patients, allowing them to focus on their treatment and recovery while receiving compassionate support along the way.

Family Weekend

Family Weekend is held at the amazing Painted Turtle Camp in Lake Hughes, California. All family members are welcome to participate in 4 days of in-person family fun, camp fire sing-a-longs, ropes course, dance parties, arts and crafts, and community building.

Additional Resources

Genehome

Genehome, developed by bluebird bio, is an online platform designed to provide comprehensive information about gene therapy. Genehome supports individuals in navigating the complexities of gene therapy.

Click here to visit the Genehome website.

NMDP

The National Marrow Donor Program® (NMDP) is a nonprofit organization dedicated to providing life-saving cellular therapies, including bone marrow and blood stem cell transplants, to patients with cerebral ALD, blood cancers, and other blood disorders.

Click here to visit the NMDP website.

Navigating Life with Adrenoleukodystrophy

Navigating ALD, created by bluebird bio, is a dedicated online resource tailored to support individuals and families affected by adrenoleukodystrophy (ALD). This platform provides a wealth of information on managing the disease, including insights into symptoms and treatment options.

Click here to visit the Navigating ALD website.

Alex TLC

This book is about a young boy diagnosed with childhood cerebral adrenoleukodystrophy. It describes the family’s journey leading up to diagnosis and how they cope with
the news. We recommend parents read this book before sharing with their child/children, so they are aware of the content.

The book is a tool to be utilized by families following a diagnosis of childhood cerebral ALD which parents can use in family discussions. It is to support children, to build emotional resilience and openness to talk and ask questions following the diagnosis.

Click here to read the English Version.

Click here to read the German Version.

Click here to read the Spanish Version.

RARE Bear

RARE Science, Inc. is a non-profit organization that helps find cures for kids with rare diseases. The RARE Bear Project is a community driven initiative and is supported by the ever-growing RARE Bear Army of volunteers that help make one of a kind bears for special one of a kind kids. Gifted RARE bears will have a serial number specifically made for a child in our program. Some RARE bears will also be made for gifts for those who donate a certain amount to our programs to support rare disease research!

Raise Awareness for ALD

Raising awareness for adrenoleukodystrophy is essential to driving progress in research, support, and advocacy for the ALD community. By sharing information and spreading the word, you help amplify the voices of those affected and bring attention to the urgent need for improved care and scientific advancements.