NLPHL Resources for Patients

Learn about nodular lymphocyte-predominant Hodgkin lymphoma and find resources recommended by GLOW patient advocates.

About nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL)

Hodgkin lymphoma can be divided into two main types: 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…

Lymphocyte-Predominant International Prognostic Score (LP-IPS)

The Lymphocyte-Predominant International Prognostic Score (LP-IPS) is a validated risk stratification tool created by GLOW.  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 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:

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

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.

 Lymphoma Research Foundation (LRF)

LRF hosts a variety of in-person, remote, and written learning opportunities for patients, caregivers, and family members.  Several resources are available in multiple languages.  GLOW partners with LRF to provide NLPHL expertise, including LRF’s Hodgkin lymphoma fact sheet, which is reviewed and updated annually by GLOW NLPHL experts.

Website: https://www.lymphoma.org/ (Sign up for event and fact sheet updates via the form at the bottom of the home page!)

LRF resources: https://lymphoma.org/resources/

LRF helpline:helpline@lymphoma.org 

 

Leukemia and Lymphoma Society (LLS)

LLS maintains an extensive Hodgkin lymphoma booklet for patients and caregivers that is reviewed by a lymphoma specialist.

Website: https://www.lls.org/

LLS contact form:  www.lls.org/form/contact-us 

 

Lymphoma Action

Lymphoma action is based in the United Kingdom and has numerous resources for patients, caregivers, and family members.

Website: https://lymphoma-action.org.uk/

 

Lymphoma Australia

Lymphoma Australia provides resources for patients with lymphoma as well as educational opportunities for professionals.

Website: https://www.lymphoma.org.au/

 

Lymphoma Coalition

The Lymphoma Coalition maintains a database of lymphoma support organizations around the world.

Website: https://lymphomacoalition.org

Database of organizations: https://lymphomacoalition.org/member-organisation/

How You Can Help