Information and Support
Rare Cancer Resources
Explore information about NUT carcinoma and rare childhood cancers, organizations supporting patients and families, and scientific publications for further reading.
Start Here
What is NUT carcinoma?
NUT carcinoma, also called NUT midline carcinoma, is a very rare and fast-growing cancer. It can appear anywhere in the body, but it is most often found in the head, neck, and lungs. It is diagnosed in children, adolescents, and adults — it is not a cancer that occurs only in children. Because it is so uncommon, it can be mistaken for other cancers, and a specialized pathology review is often part of confirming the diagnosis.
For a fuller explanation, read the National Cancer Institute's NUT carcinoma overview.
Hamish Fenton was diagnosed with NUT carcinoma in September 2023, at eleven years old. His family experienced firsthand how difficult it can be to navigate a rare diagnosis — which is part of why this page exists. Read Hamish Fenton's story.
NUT carcinoma resources
Medical information, specialist centers, and the international registry dedicated to NUT carcinoma.
National Cancer Institute
NUT Carcinoma overview(opens in a new tab)
A plain-language explanation of what NUT carcinoma is, where it tends to appear in the body, and how it is diagnosed.
National Cancer Institute
Childhood NUT Carcinoma Treatment (PDQ®)(opens in a new tab)
The NCI's regularly reviewed summary of how NUT carcinoma is evaluated and treated in children and adolescents.
Dana-Farber / Harvard Cancer Center
International NUT Carcinoma Registry(opens in a new tab)
A registry created to raise awareness of NUT carcinoma, assist with pathology review, and gather data that supports research.
International NUT Carcinoma Registry
Registry enrollment for patients and families(opens in a new tab)
Information for patients, families, and physicians who would like to take part in the registry.
Dana-Farber Cancer Institute
NUT carcinoma care and research(opens in a new tab)
Details on specialist care, treatment teams, and clinical research focused specifically on NUT carcinoma.
Pediatric cancer resources
Broader information on childhood cancer, research, and where children are treated.
National Cancer Institute
Childhood cancers(opens in a new tab)
An entry point to information on the many different cancers diagnosed in children and adolescents.
National Cancer Institute
Cancer in children and adolescents(opens in a new tab)
A fact sheet covering how childhood cancers differ from adult cancers and where children are usually treated.
Children's Oncology Group
Children's Oncology Group(opens in a new tab)
The NCI-supported clinical trials group devoted to childhood and adolescent cancer research.
National Pediatric Cancer Foundation
National Pediatric Cancer Foundation(opens in a new tab)
An organization focused on funding research into less toxic, more effective treatments for children with cancer.
EXPeRT
European Cooperative Study Group for Pediatric Rare Tumors (EXPeRT)
A European network of specialists working to improve knowledge, treatment, and care for children and adolescents with very rare tumors. Its website includes information for families and resources for healthcare professionals.
Visit EXPeRT(opens in a new tab)
Family and caregiver support
Organizations offering support, counseling, and practical help to families and caregivers. These services are provided by the organizations listed, not by Hamish's Difference.
ACCO
American Childhood Cancer Organization(opens in a new tab)
Free books, resources, and support for children with cancer, their parents, and their siblings.
CancerCare
CancerCare(opens in a new tab)
Professional support services, counseling, and support groups for people affected by cancer and those caring for them.
National Cancer Institute
Support for caregivers(opens in a new tab)
Practical guidance for family members and caregivers supporting someone through cancer treatment.
Research & Further Reading
Explore publications about NUT carcinoma and rare childhood tumors, including research priorities and the importance of collaboration. These articles include medical terminology and may be helpful to discuss with your care team.
- Rare pediatric tumors
Pediatric Blood & Cancer · 2023
Children's Oncology Group's 2023 blueprint for research: Rare tumors
An overview of the Children’s Oncology Group’s research priorities for rare tumors in children and adolescents.
View on PubMed(opens in a new tab) - NUT carcinoma
Clinical Cancer Research · 2022
Report of the First International Symposium on NUT Carcinoma
A report bringing together expert discussions of NUT carcinoma biology, treatment research, and future directions, with perspectives from patients and families.
View on PubMed(opens in a new tab) - Rare pediatric tumors
European Journal of Cancer · 2019
Defining and listing very rare cancers of paediatric age: consensus of the Joint Action on Rare Cancers in cooperation with the European Cooperative Study Group for Pediatric Rare Tumors
A consensus paper establishing a shared definition and list of very rare childhood cancers to help guide research priorities and address clinical needs.
View on PubMed(opens in a new tab) - Rare pediatric tumors
Journal of Clinical Oncology · 2015
Rare Tumors in Children: Progress Through Collaboration
A publication exploring the role of collaboration in advancing research and care for children with rare tumors.
View on PubMed(opens in a new tab)
Why we gather these resources
Hamish's Difference is committed to advancing the search for cures, strengthening the communities that surround families, and advocating for greater awareness and support. Sharing reliable information is part of that work.