NLPHL PATIENT RESOURCES

Learn about nodular NLPHL patient resources recommended by GLOW patient advocates.

NODULAR LYMPHOCYTE-PREDOMINANT HODGKIN LYMPHOMA (NLPHL)

Overview

Hodgkin lymphoma has two main subtypes: nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL) and classic Hodgkin lymphoma (cHL). While much is known about cHL, there is no known cause of NLPHL and there is a lot that is yet to be learned about it. Researchers currently understand that NLPHL…

Is rare, accounting for only 5-10% of Hodgkin lymphoma diagnoses
Is a slow-growing cancer
Occurs in patients of all ages, from children to older adults
Does not express the CD30 antigen, which is typically found in cHL
Is most often diagnosed in males and at early stages
Has a risk of late relapses and a risk for transformation to aggressive non-Hodgkin lymphomas more than 20 years after initial diagnosis

Diagnosis, staging, and treatment options

Patient-friendly information about NLPHL and how it is diagnosed, staged, and treated is explained by GLOW researchers in this webinar co-hosted by GLOW and the Lymphoma Research Foundation. Additional written resources include:

For more in-depth information, GLOW collaborators published an analysis of recent research and advancements in the understanding of NLPHL biology, risk stratification, and treatment in November 2024 which provides an overview of the latest data and treatment approaches.

Risk stratification: the Lymphocyte-Predominant International Prognostic Score (LP-IPS)

GLOW’s Lymphocyte-Predominant International Prognostic Score (LP-IPS) is a validated risk stratification tool. The LP-IPS is meant to be used together with diagnosis and staging information to understand a patient’s risk level and whether or not less aggressive (also called de-intensified or de-escalated) treatment may be appropriate. The LPS-IPS is calculated using 4 known factors that are related to NLPHL survival and/or to transformation to aggressive lymphoma. The LP-IPS assigns one risk point each for:

A score of 3-4 indicates that a patient has high risk NLPHL. Approximately 2.7% of NLPHL diagnoses are categorized as high risk when using the LP-IPS.

NLPHL: WHAT'S IN A NAME?

NLPHL has had several names over the years as researchers have learned more about how to best classify types of lymphoma. Below is a list of alternative names for NLPHL that you may see:

Nodular lymphocyte predominant B-cell lymphoma (NLPBL), lymphocyte-predominant Hodgkin lymphoma (LP or LPHL)
Poppema, lymphome Poppema, paragranulome de Poppema, paragranulome de Poppema et Lennert, lymphocytaire ou paragranulome de Poppema
La maladie de Hodgkin nodulaire à prédominance lymphocytaire (MHNPL), lymphome hodgkinien nodulaire à prédominance lymphocytaire (LHNPL)
Paragranuloma, nodular paragranuloma, lymphocyte-predominant Hodgkin’s disease (LPHD), nodular lymphocyte-predominant Hodgkin’s disease (NLPHD)
Historical names for NLPHL in academic literature have included: lymphocytic and reticulum cell, early Hodgkin’s disease, lymphoreticular medullary reticulosis, benign Hodgkin’s disease, reticular Lymphoma, indolent Hodgkin’s disease, and follicular lymphoma Type V Hodgkin’s disease type

There is still debate among lymphoma researchers about how to classify NLPHL. NLPHL and NLPBL are the two terms currently utilized by the international scientific community.

GLOW uses the term NLPHL based on its pathology and current scientific understanding.

FINDING SUPPORT FOR NLPHL

There are several organizations around the world that provide informational, financial, clinical trials identification, and peer support for patients with NLPHL, their caregivers, and their families. Below are a few tips and resources if you are seeking support.

Tips

Information about NLPHL is often located in general Hodgkin lymphoma resources, booklets, and fact sheets.
We recommend that you conduct searches using the terms “NLPHL” and “NLPBL.” In some countries, it may be better known as “Poppema.”
To find patient-oriented information, it may be helpful to search for “NLPHL Patient Resources” or similar phrasing to filter out academic publications.
Many lymphoma and cancer support organizations offer opportunities to connect via email, webinars, etc. and are not restricted to patients in a specific country. Several have translation services available if requested.

Lymphoma support groups

Many cancer support organizations provide support for patients with NLPHL. Below are a few lymphoma-specific support organizations that provide extensive patient and caregiver support to patients worldwide.