By The Lucas Project
Stephan Kemp, PhD, is an adrenoleukodystrophy (ALD) researcher at Amsterdam UMC. His specialization is biochemical research into genetic metabolic disease. He is a scientist, not a physician offering clinical appointments. Amsterdam UMC researcher profile
Specialty and research focus
His work investigates ALD biology and why the condition can have different manifestations. Kemp and colleagues also contributed to the work leading to ALD newborn screening in the Netherlands. These contributions connect laboratory science with the practical challenge of identifying affected families. Research into biochemical findings and ABCD1 variants must not be presented as a reliable prediction of an individual child’s future. Amsterdam UMC researcher profile Official ALD team contact
From ALD biology to newborn screening
Amsterdam UMC describes Kemp’s work as part of the effort that brought ALD into Dutch newborn screening. Kemp and neurologist Marc Engelen submitted a request for inclusion in 2013; screening for newborn boys began on October 1, 2023. That history illustrates the years of scientific and implementation work behind a screening program. Amsterdam UMC screening history
His role also helps explain why an ALD research team includes people with different training. Biochemical researchers investigate disease mechanisms and testing questions; clinicians evaluate what findings mean for an individual and organize care. A research result can inform clinical understanding without answering every question a family has about the future.
For families reading about an ABCD1 variant, it is useful to distinguish a question about diagnosis from a question about prognosis. Clarifying what a variant or biochemical result means does not necessarily predict when symptoms will appear, or which symptoms a person will develop. Interpretation belongs with the family’s genetics and medical team.
How to contact the team
The Amsterdam UMC ALD team publishes s.kemp@amsterdamumc.nl. Amsterdam UMC lists this address for research inquiries. Families seeking clinical care can use the hospital’s referral process. Amsterdam UMC ALD team
How to support the work
A dedicated donation page for Kemp’s ALD laboratory has not been verified. Ask the research team which institutional fund can accept a gift designated for its ALD work and request the official giving instructions before donating. Amsterdam UMC researcher profile
Questions for a research inquiry
State whether the inquiry concerns a published study, a testing project or research support. Ask which team handles that question and what information it needs. If medical records are requested, ask for the institution’s secure submission method rather than sending them in an initial email.
Professional contacts and giving designations were checked on November 11, 2026; confirm them with the institution before making arrangements.