The ALD Connect website offers a great video that explains ALD
As part of our ongoing focus on multi-stakeholder collaboration in the rare disease space, we are highlighting successful and unique examples of this programming to improve patient outcomes. ALD Connect is a Patient-Powered Research Network (PPRN) consortium composed of ALD patients, patient advocates, and researchers supported in part by the Patient-Centered Outcomes Research Institute (PCORI). The mission of the organization is to improve health outcomes for patients with X-linked adrenoleukodystrophy (ALD) by empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care.
ALD Connect’s Impressive Track Record
ALD Connect is a model of what can be accomplished when patient advocacy groups, academic researchers and physicians, and biopharmaceutical companies work together to accomplish their goals. Ben Lenail, a founder of the organization, was diagnosed in his 40s with adrenomyeloneuropathy (AMN), a late-onset phenotype of ALD. Frustrated by the lack of knowledge and options he was confronted with, Ben leveraged his own 25 years of technology and start-up experience to create ALD Connect to accelerate diagnosis and treatment of the disease and ultimately eradicate the debilitating single-gene disorder. Read More