NLPHL Resources for Patients

It can be difficult to find high-quality patient resources for rare cancers like NLPHL.  Below are resources which have been medically reviewed by GLOW NLPHL experts  or identified by NLPHL patient advocates as useful in their patient journey. 

Types of Hodgkin Lymphoma

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 a lot that is yet to be learned about NLPHL.

 

Researchers currently understand that NLPHL…

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:

NLPHL Discovery: A timeline

1832

 Thomas Hodgkin identifies Hodgkin lymphoma.

1944

Jackson & Parker describe Hodgkin’s paragranuloma (NLPHL) as a distinct clinical entity. NLPHL is no longer considered “early Hodgkin’s.”

1988

 Regula et. al conclude NLPHL may have significant clinical and immunophenotypic differences from other Hodgkin lymphomas. Independent research groups conduct pilot studies of de-intensified treatment for NLPHL.

1997

The World Health Organization recognizes NLPHL as a distinct subtype of Hodgkin lymphoma.

2003

Fan et. al identify 6 histopathologic NLPHL variants.

2011

Accelerated approval of CD30-targeted brentuximab vedotin for the treatment of Hodgkin lymphoma. Patients diagnosed with NLPHL (which does not express the CD30 antigen) are excluded from subsequent frontline Hodgkin lymphoma trials.  

2020

The Global nLPHL One Working Group (GLOW) is established.

2022

 The International Consensus Classification (ICC) Clinical Advisory Committee (CAC) reclassifies NLPHL to nodular lymphocyte predominant B-cell lymphoma (NLPBL).  The World Health Organization continues to use the term NLPHL. 

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