Resources & Support
Learn more about resources and support for those with ALD and their families.
Every year, ALD Connect hosts an Annual Meeting that brings all ALD stakeholders together—patients, caregivers, patient advocates, clinician/researchers, and pharmaceutical companies—to present the latest developments in ALD research, clinical trial information, and patient perspectives, and to discuss how we can work together to advance new therapies with the goal of curing ALD.
Patient Learning Academies
We also host special separate events (or a dedicated day during the Annual Meeting) geared towards patients and families. Experts known in the field present the science of ALD and the current knowledge of the disease in an understandable manner for many of us who do not have a medical background. Always a relaxed environment, our speakers encourage questions during their presentations and are usually available to talk through the event. But more importantly, these live events allow patients and families to meet others who are in similar situations, share experiences, and receive needed support.
Not everyone can make it to our Annual Meeting or a Patient Learning Academy. With that in mind, ALD Connect coordinates periodic telephone conference calls that allow similar support from various peer groups. Whether it’s Men with AMN, Women with AMN, or Newborn Screening Parents, our latest Breakout Sessions are continuing to bring support and deepen our community’s connections with each other.
Webinars and Videos
We also produce informative webinars and educational videos that cover a number of topics. Browse our webinars and videos, or subscribe to our YouTube channel.