Rare neoplastic disease

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2Active trials48Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Orbital lymphoma is a rare cancer that develops in or around the eye socket (the orbit), which is the bony cavity that holds the eye. It belongs to a group of cancers called lymphomas, which start in cells of the immune system called lymphocytes. The most common type found in this area is called mucosa-associated lymphoid tissue (MALT) lymphoma, though other types such as diffuse large B-cell lymphoma and follicular lymphoma can also occur here. The disease can affect one or both eyes and may involve the eyelid, the conjunctiva (the clear tissue covering the white of the eye), the tear gland (lacrimal gland), or the fatty tissue behind the eyeball. People with orbital lymphoma often notice a painless swelling or lump around the eye, a feeling of pressure, or a visible pinkish-salmon colored patch on the white of the eye. Vision changes, double vision, or the eye appearing to bulge forward (called proptosis) are also common signs. Because symptoms can be subtle and develop slowly, the diagnosis is sometimes delayed. Treatment depends on the type and stage of lymphoma. Low-grade types like MALT lymphoma are often treated with radiation therapy, which is very effective. Higher-grade or more widespread disease may require chemotherapy, immunotherapy with drugs like rituximab, or a combination of these. In some cases, especially when linked to a bacterial infection called Chlamydia psittaci, antibiotic treatment has shown benefit. Overall, many patients do well with treatment, especially when the disease is caught early and remains localized to the eye area.

Also known as:

Key symptoms:

Painless swelling or lump around the eyeSalmon-pink or reddish patch visible on the white of the eye or inner eyelidEye bulging forward (proptosis)Double visionBlurred or reduced visionDrooping of the eyelid (ptosis)Feeling of pressure or fullness around the eyeRedness or irritation of the eyeRestricted eye movementSwelling of the eyelid

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Jun 2027Zipalertinib With Carboplatin and Pemetrexed for the Treatment of Resectable, Stage II-IIIB, Non-Small Cell Lung Cancer

Jonsson Comprehensive Cancer Center — PHASE2

TrialNOT YET RECRUITING
Apr 2026NCI Childhood Cancer Data Initiative (CCDI) Led Pediatric, Adolescent, and Young Adult Rare Cancer Registry for Very Rare Solid Tumors

National Cancer Institute (NCI)

TrialNOT YET RECRUITING
Feb 2026International Multicentric Retrospective Study on the Use of EV+P as First-line Therapy in Patients With la/mUC

Aron Research Foundation Ets

TrialNOT YET RECRUITING
Jan 2026Rare Tumor Focused Platform Study of Innovative Therapies and Technologies (PLATFORM2)

Cancer Institute and Hospital, Chinese Academy of Medical Sciences — PHASE1, PHASE2

TrialNOT YET RECRUITING
Jan 2026Firmonertinib Combined With Definitive Radiotherapy in Stage III Unresectable EGFR Uncommon Mutant Pulmonary Adenocarcinoma

Hunan Cancer Hospital — PHASE2

TrialNOT YET RECRUITING
Dec 2025A Study to Assess the Efficacy and Safety of Zipalertinib Versus Placebo for Adjuvant Treatment in Participants With Stage IB-IIIA NSCLC With Uncommon EGFR Mutations, Following Complete Tumor Resection

Taiho Oncology, Inc. — PHASE3

TrialRECRUITING
Jul 2025Pragmatic Analysis of Complex Radiotherapy Cases In Cancer of the Lung

The Christie NHS Foundation Trust

TrialACTIVE NOT RECRUITING
Jul 2025Performance Indicators and Impact on the Care Pathway of Sequencing on the SeqOIA and AURAGEN (Seqogen) Platforms for Oncology Patients

Assistance Publique - Hôpitaux de Paris

TrialRECRUITING
Apr 2025Treatment Guided by Comprehensive Genome and Transcriptome Analysis Versus Standard of Care in Advanced Rare Cancers

German Cancer Research Center

TrialNOT YET RECRUITING
Mar 2025Precision Cancer Therapy in Rare Cancers

Oslo University Hospital — PHASE2

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Rare neoplastic disease.

2 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

2 recruitingView all trials with filters →
Phase 21 trial
PLATFORM Study of Precision Medicine for Rare Tumors
Phase 2
Actively Recruiting
PI: Ning Li, Doctor (Cancer Institute and Hospital, Chinese Academy of ) · Sites: Beijing · Age: 1899 yrs
Other1 trial
Performance Indicators and Impact on the Care Pathway of Sequencing on the SeqOIA and AURAGEN (Seqogen) Platforms for Oncology Patients
Actively Recruiting
PI: Isabelle DURAND-ZALESKI, Professor (Greater Paris University Hospitals) · Sites: Lyon; Paris +1 more

Specialists

Showing 25 of 48View all specialists →
IP
Isabelle Durand-Zaleski, Professor
Paris
Specialist

Rare Disease Specialist

PI on 2 active trials
AA
Andrea B Apolo
Birmingham, Alabama
Specialist

Rare Disease Specialist

PI on 4 active trials
ML
Morgan Lam
Specialist
PI on 3 active trials9 Rare neoplastic disease publications
SM
Silvia Stacchiotti, MD
Specialist
PI on 4 active trials
AS
Ann (Annie) W Silk
Los Angeles, California
Specialist

Rare Disease Specialist

PI on 1 active trial
SD
Stefan Fröhling, Prof. Dr.
Specialist
PI on 2 active trials
RM
Ranjana Advani, MD
STANFORD, CA
Specialist
PI on 3 active trials
MD
Mary F Wedekind Malone, D.O.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 3 active trials
TM
Tammuella Chrisentery-Singleton, MD
Phoenix, Arizona
Specialist

Rare Disease Specialist

PI on 2 active trials
KP
Kan Yonemori, MD, PhD
Specialist
PI on 2 active trials
AP
Anna Jansen, MD, PhD
Silver Spring, Maryland
Specialist

Rare Disease Specialist

PI on 2 active trials
GM
Gianni Bisogno, MD
Specialist
PI on 2 active trials
DM
Dolores Caballero, MD
Specialist
PI on 2 active trials
MM
Michael Recht, MD, PhD, MBA
CLEVELAND, OH
Specialist
PI on 1 active trial
EP
elif polat
Specialist
PI on 1 active trial5 Rare neoplastic disease publications
AT
Amanda M Termuhlen
MINNEAPOLIS, MN
Specialist
PI on 1 active trial1 Rare neoplastic disease publication
MM
Michael Heinrich, MD
Specialist
PI on 1 active trial
JM
Julie Vose, MD
MANCHESTER, NH
Specialist
PI on 2 active trials
PM
Pierluigi Porcu, MD
PHILADELPHIA, PA
Specialist
PI on 2 active trials

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Rare neoplastic disease.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Rare neoplastic disease

Disease timeline:

New recruiting trial: Performance Indicators and Impact on the Care Pathway of Sequencing on the SeqOIA and AURAGEN (Seqogen) Platforms for Oncology Patients

A new clinical trial is recruiting patients for Rare neoplastic disease

New recruiting trial: A Retrospective Study: Evaluation of the Efficacy of Immunotherapy With Rare Mutations in Non-small Cell Lung Cancer

A new clinical trial is recruiting patients for Rare neoplastic disease

New recruiting trial: NTRK Gene Fusion - Positive Advanced or Recurrent Solid Tumors, a Rare Cancer Caused by Specific Changes in the Genes

A new clinical trial is recruiting patients for Rare neoplastic disease

New recruiting trial: Synovial Sarcoma Registry / Biospecimen Repository

A new clinical trial is recruiting patients for Rare neoplastic disease

New recruiting trial: Survival Outcome of EGFR-TKI in Uncommon EGFR Mutant Advanced NSCLC

A new clinical trial is recruiting patients for Rare neoplastic disease

New recruiting trial: Evaluation of Rare and Complex Tumours of the Thoraco-Abdominal and Soft Tissue District

A new clinical trial is recruiting patients for Rare neoplastic disease

New recruiting trial: A Study to Evaluate the Efficacy and Safety of Sutetinib Maleate Capsule in Locally Advanced or Metastatic NSCLC

A new clinical trial is recruiting patients for Rare neoplastic disease

New recruiting trial: SPECTA: Screening Cancer Patients for Efficient Clinical Trial Access

A new clinical trial is recruiting patients for Rare neoplastic disease

New recruiting trial: Neoadjuvant Umbrella Trial for Patients With Unresectable Stage III NSCLC Harboring Rare Mutations.

A new clinical trial is recruiting patients for Rare neoplastic disease

New recruiting trial: Registry Study on Rare Cancers in Korea

A new clinical trial is recruiting patients for Rare neoplastic disease

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.What exact type of orbital lymphoma do I have, and how does that affect my treatment options?,Has the lymphoma spread beyond my eye area, and what tests are needed to find out?,Is radiation therapy, chemotherapy, or a combination the best approach for my case?,What are the risks to my vision from the tumor itself and from the treatment?,Should I be tested for Chlamydia psittaci infection, and could antibiotics be part of my treatment?,How often will I need follow-up appointments, and what signs of relapse should I watch for?,Are there any clinical trials I should consider for my type of orbital lymphoma?

Common questions about Rare neoplastic disease

What is Rare neoplastic disease?

Orbital lymphoma is a rare cancer that develops in or around the eye socket (the orbit), which is the bony cavity that holds the eye. It belongs to a group of cancers called lymphomas, which start in cells of the immune system called lymphocytes. The most common type found in this area is called mucosa-associated lymphoid tissue (MALT) lymphoma, though other types such as diffuse large B-cell lymphoma and follicular lymphoma can also occur here. The disease can affect one or both eyes and may involve the eyelid, the conjunctiva (the clear tissue covering the white of the eye), the tear gland (

How is Rare neoplastic disease inherited?

Rare neoplastic disease follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Rare neoplastic disease typically begin?

Typical onset of Rare neoplastic disease is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Rare neoplastic disease?

Yes — 2 recruiting clinical trials are currently listed for Rare neoplastic disease on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Rare neoplastic disease?

25 specialists and care centers treating Rare neoplastic disease are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.