At ALD Connect, our mission is to improve the health outcomes of individuals affected by adrenoleukodystrophy (ALD). By empowering patients, raising awareness, and accelerating the translation of scientific breakthroughs into better clinical care, we aim to make a lasting impact on the ALD community. Together, we are committed to revolutionizing care and driving progress toward a cure.
ALD Connect is a non-profit organization that unites patients, families, physicians, scientists, advocates, and industry professionals. Our collaborative network is dedicated to advancing research, enhancing clinical care, and providing vital support to those impacted by ALD. We believe that by working together, we can transform the lives of those affected by this rare and devastating disease.
Adrenoleukodystrophy (ALD) is a rare, genetic disorder that progressively damages the adrenal glands, spinal cord, and the white matter (myelin) of the nervous system. It affects approximately 1 in 15,000 people worldwide, causing a range of neurological and physical symptoms. As a complex and life-altering disease, ALD demands focused attention and coordinated care across the medical and scientific communities.
There’s still time to join us online for the world’s largest ALD-specific conference, taking place November 7–8. Hear from leading experts, connect with the community, and stay informed on the latest in ALD research and care.
Advancing treatments and improving outcomes for ALD patients requires cutting-edge research and active participation in clinical trials. ALD Connect works closely with researchers, healthcare providers, and the patient community to promote involvement in clinical trials aimed at developing new therapies and gaining deeper insights into the disease. Together, we are pushing the boundaries of what’s possible in ALD care and research.
Navigating the challenges of ALD can be overwhelming, but you are not alone. ALD Connect offers a comprehensive range of resources to help families find expert medical advice, financial assistance, emotional support, and answers to common questions. We are here to guide you through every step of your journey, providing the information and assistance you need to cope with life’s daily challenges while managing ALD.
Join ALD Connect and make a lasting impact in the lives of those affected by adrenoleukodystrophy. By getting involved, you support essential research, enhance patient advocacy, and help foster a supportive community. From our ALD Landscape Project and Annual Meetings to our Community Calls and Patient-Led Planning Committee, there are countless ways to contribute. Your participation shapes the future of ALD care, connecting you with others who share your commitment.
ALD Connect is here to support patients, families, and healthcare providers navigating the challenges of adrenoleukodystrophy. Whether you have questions, need guidance, or want to learn more about how we can help, we encourage you to get in touch.
