ALD Connect
Biotech Partnership Project: Intellectual Property
Partnering with biotech to acquire IP, preserve knowledge, and accelerate research progress.
Posted May 23, 2025
Background & Context
We have parents in our community who are helping us explore this opportunity, recognizing the importance of long-term stewardship of scientific knowledge generated through engagement with our patient population. Many industry partners come and go—often leaving once a project is no longer financially viable. When that happens, the insights and innovations developed through interactions with our community are at risk of being lost. By exploring the legal and strategic pathways to acquire or secure intellectual property, we aim to ensure that the progress made through these collaborations remains accessible, mission-aligned, and available to benefit patients, regardless of shifting commercial interests.
Work & Deliverables
A lawyer would need to provide our organization with the knowledge, tools, and strategic guidance necessary to evaluate and pursue the acquisition of intellectual property (IP) from biotechnology companies. This includes educating our team on the legal structures, risks, and regulatory considerations specific to nonprofit IP transactions; outlining the due diligence process; reviewing our governance policies for alignment with IRS regulations; and advising on how to structure transactions to avoid private inurement, manage risk, and maintain mission alignment.
ALD Connect
ALD Connect is a 501(c)(3) non-profit organization dedicated to improving the quality of life for individuals affected by adrenoleukodystrophy (ALD) through advocacy, education, research, and support. Founded in 2013 by a passionate group of clinicians, scientists, and patient advocates, our organization emerged from the collective realization that a collaborative network was essential to ensure clinical care kept pace with the rapid scientific advancements in ALD research. Over the past decade, as the landscape of ALD has evolved, we have grown and adapted to continue meeting the needs of our patient community. Our mission is to improve health outcomes for patients with adrenoleukodystrophy (ALD) by empowering them, raising awareness, and accelerating the translation of scientific advances into better clinical care.
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ALD Connect
ALD Connect is a 501(c)(3) non-profit organization dedicated to improving the quality of life for individuals affected by adrenoleukodystrophy (ALD) through advocacy, education, research, and support. Founded in 2013 by a passionate group of clinicians, scientists, and patient advocates, our organization emerged from the collective realization that a collaborative network was essential to ensure clinical care kept pace with the rapid scientific advancements in ALD research. Over the past decade, as the landscape of ALD has evolved, we have grown and adapted to continue meeting the needs of our patient community. Our mission is to improve health outcomes for patients with adrenoleukodystrophy (ALD) by empowering them, raising awareness, and accelerating the translation of scientific advances into better clinical care.