We’re proud to launch a new resource designed specifically for the VHL community: the VHL Research Library. Whether you’re living with VHL, supporting a loved one, or simply looking to learn more about VHL Syndrome, this online library brings together the latest and most relevant VHL research in one easy-to-use place.
We created this library because we believe patients and families deserve access to the same information as doctors and researchers. When you understand your condition, you’re better able to advocate for yourself at medical appointments and make important treatment decisions that shape your care.
The library is hosted on a platform called Zotero and is completely free to use. You can view it online here or download it to your computer. Most importantly, you don’t need a scientific background to use it. Everything has been organized using categorical tags and is searchable – so you can learn at your own pace.
Here’s a peek at what the library looks like:
What you’ll find in the library
The library features a wide range of research articles, books, and educational materials carefully selected to reflect the topics that matter most to our community. For many articles, a PDF copy of the full text is also available.
The library includes four main types of research articles:
- Original Research: These articles share new scientific discoveries. They’re great for learning how VHL tumors form, how treatments work, and what’s new in VHL research.
- Reviews: These articles summarize everything researchers know about a specific topic. They are helpful when you want a big-picture understanding of something like VHL-related kidney tumors or surveillance strategies.
- Clinical Trial Reports: These articles explore how effective and safe a new treatment or approach was for a group of patients. They are key for following the progress of new and existing drug treatments, like Welireg (belzutifan).
- Case Studies: These articles take a detailed look at one or a few VHL patients. They are often used to highlight rare symptoms, treatment decisions, or outcomes.
What to expect
We know that all the technical details and terminology in research articles can be overwhelming. That’s why we’ve also included simple guides to help you understand how research articles are structured and how to navigate them with confidence.
To help you connect the science to your own experience, we’ve created a visual glossary showing the organs affected by VHL. This helpful diagram shows which tumors are associated with which parts of the body, as well as some other key terms that commonly appear in VHL research. You can use this image as a reference while browsing the library to find research topics that matter to you most.
Most articles include the following:
- Abstract: A summary of the article. Read this first to see if the article is relevant to you.
- Introduction: Explains why the research was done and what problem it addresses.
- Methods: Describes how the research was conducted.
- Figures and Tables: Visuals that show the data. These can help you understand the results.
- Results: Presents what the study discovered.
- Discussion: Explains what the results mean and why they matter.
- References: A list of other research articles the authors used to inform the study. This is a great place to find related articles.
Here are some tips for making research articles easier to understand:
- Skim the article
Start with the abstract, introduction, and discussion sections. This will give you the “big picture” of the study without getting bogged down in technical details.
- Then, re-read the article with these key questions in mind:
- Is this topic relevant to me?
- What are the main findings?
- Why do they matter?
- Take notes
Jot down any questions, unfamiliar terms, or anything you’d like to learn more about.
- Use AI research tools to help
Some examples include:
- Consensus – Useful for generating plain-language summaries of research article abstracts, and finding research-backed answers to your health and science questions.
- SciSummary – Useful for summarizing entire research articles.
- SciSpace – Provides clear explanations of technical terms and findings within a research paper.
- Scite – Helps if you want to know how credible or controversial a study is by showing you what other scientists are saying about it.
- Litmaps – Creates a “map” of research papers based on what you’ve already read or are curious about.
[ For a printable version of this information, click here. ]
Help us make the library even better
The VHL Research Library is a living resource built with you in mind. Whether you’re a patient, caregiver, researcher, or clinician, this library is meant to support you.
Have a topic you’d like to learn more about? A research article you’d like explained in plain language? A resource you think could help others? We’d love to hear from you.
With your input, we can keep making the library stronger, more useful, and more accessible to all members of the VHL community.
This post is brought to you with support from:
