This page is designed to connect patients, families, advocates, and the broader community with trusted information related to our research. Here, you’ll find links to advocacy groups, registries, gene variant databases, care guidelines, and more about our research. Our goal is to support individuals affected by hereditary blood, lung, and cancer conditions through reliable tools, accessible science, and collaboration. We are committed to making our work transparent and impactful for those it’s meant to serve.
National Advocacy & Clinical Genetics Organizations
Diamond Blackfan Anemia
Patient Advocacy & Registry
Gene Variant Database
Care Guidelines
Fanconi Anemia
Patient Advocacy & Registry
Gene Variant Database
Care Guidelines
Churpek Lab Research
Explore Churpek Lab research as it relates to Fanconi Anemia, presented in both general and scientific language. Additionally, we’ll write a short recap of recent publications in plain language.
Familial Leukemia & Lymphoma Syndromes
Patient Advocacy & Registry
Gene Variant Database
Care Guidelines
- GeneReviews Homepage
- GeneReviews – DDX41 Associated Familial MDS/AML By Dr. Churpek & Kelcy Smith-Simmer, CGC from UW-Madison
- NCCN Guidelines – Myelodysplastic Syndromes
- NCCN Guidelines for Patients
- NCCN Guidelines – Genetic/Familial High-Risk Assessment
- Risk assessment and genetic counseling for hematologic malignancies—Practice resource of the National Society of Genetic Counselors
Churpek Lab Research
Explore Churpek Lab research as it relates to Familial Leukemia and Lymphoma Syndromes, presented in both general and scientific language. Additionally, we’ll write a short recap of recent publications in plain language.
Li-Fraumeni Syndrome
Patient Advocacy & Registry
Gene Variant Database
Care Guidelines
Churpek Lab Research
Explore Churpek Lab research as it relates to Li-Fraumeni Syndrome, presented in both general and scientific language. Additionally, we’ll write a short recap of recent publications in plain language.
Mesothelioma
Patient Advocacy & Registry
Care Guidelines
- Treatment of Pleural Mesothelioma: ASCO Guideline Update
- Medical and Surgical Care of Patients With Mesothelioma and Their Relatives Carrying Germline BAP1 Mutations
- BAP1 Tumor Predisposition Syndrome
Churpek Lab Research
Explore Churpek Lab research as it relates to Mesothelioma, presented in both general and scientific language. Additionally, we’ll write a short recap of recent publications in plain language.
RUNX1
Patient Advocacy & Registry
Gene Variant Database
Care Guidelines
SAMD9/SAMD9L
Patient Advocacy & Registry
Shwachman-Diamond Syndrome
Patient Advocacy & Registry
Gene Variant Database
Care Guidelines
Churpek Lab Research
Explore Churpek Lab research as it relates to Shwachman-Diamond Syndrome, presented in both general and scientific language. Additionally, we’ll write a short recap of recent publications in plain language.
Telomere Biology Disorder
Patient Advocacy & Registry
Gene Variant Database
Care Guidelines
Churpek Lab Research
Explore Churpek Lab research as it relates to Telomere Biology Disorder, presented in both general and scientific language. Additionally, we’ll write a short recap of recent publications in plain language.