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Where Can LGL Leukemia Patients Can Find Support and Resources?

living with cancerKristine Olson, PhD, contributed this post. She is an instructor of research with UVA Cancer Center and works closely with Thomas P. Loughran, Jr., MD, who discovered LGL leukemia.

LGL leukemia is a rare cancer, with only about 1,000 people diagnosed per year in the United States. Despite its rarity, there are informative and supportive resources available. Remember that the resources described below are for informational purposes only. You should contact your physician if you have questions about your specific situation.

A Comprehensive LGL Leukemia Web-Based Resource

Through generous philanthropic gifts, the Loughran Lab has created a one-stop resource for LGL leukemia on the UVA Cancer Center website.

The UVA LGL Leukemia Registry and Program

From the homepage, you can find information about the LGL Leukemia Registry, including the informed consent process and the Travel Assistance Program. The assistance program was created by generous philanthropic gifts and provides financial help for qualifying new patients to travel to UVA to see Thomas Loughran, MD, for a clinic appointment.

LGL Leukemia Educational Resources are Available

In addition to information about the Registry, we also have several tools for patients to learn about LGL leukemia. These tools present the information in different ways, allowing patients to choose how much or little detail they are interested in.

First, the frequently asked questions (FAQ) page has answers to the most commonly-asked patient questions. These are generally short and contain basic information. These are written in general terms and patients should always consult their physicians about their particular situation. The FAQs are updated regularly and driven by patient inquiries. If you have a general question about LGL leukemia that you would like answered, contact us by email or phone (434.243.8431).

A second resource is this LGL leukemia blog that you are reading right now. These blog stories have more information than FAQs and cover a wide variety of topics. Some of the stories have and will cover information in the FAQs, but in more detail and with a different perspective. The topics covered have also been largely patient-driven, and new blog articles are regularly posted.

Several other resources have more detail or different formats than the FAQs or blog articles:

  • The Patient Support Resources give patients the option to communicate with other patients. For example, the LGL Leukemia Facebook Group is a closed group (unaffiliated with UVA) where you can talk to people going through similar situations.
  • The Research and Treatment Resources are links to journal articles and news stories about the lab’s research. Most of these cater to a wide patient audience, while the journal articles may be most informative to patients who have a science background.
  • The Podcasts are audio files by RGI/RareShare Ask the Expert that feature Loughran and his colleagues discussing LGL leukemia topics.
  • The Educational Content is posted as a series of easily downloadable PDF documents. Each PDF covers one particular topic and is like a step-by-step tutorial. The tutorials utilize diagrams and text to explain basic biology information and lead up to the LGL leukemia diagnostic tests. The goal of this resource is that anyone, even people with no science background, can understand the complexities of LGL leukemia. These topics are also patient-driven and additional content is regularly posted. If you have an LGL leukemia topic that you would like to see as a tutorial, contact us by email or phone (434.243.8431).

Support Potential Cures for LGL Leukemia

By donating and participating in our LGL Leukemia Registry, the only national registry that collects, manages and analyzes information on people with LGL leukemia.

Merging Research and Patient Resources

The resources described in this article are largely suggestions from patients and are explained in layperson terms. We always welcome suggestions for future topics. In addition to general LGL leukemia information, another goal is to communicate Loughran Lab research results published in scientific journals. We want to provide a unique resource for patients that allows us to describe our research results in layperson terms so patients can read about our advances in the lab.

If you have LGL leukemia, you can empower researchers by consenting to join the LGL Leukemia Registry at UVA. If you join and donate blood samples, you give our research group the opportunity to learn more about disease development and a chance to find new and better therapeutics. To read more about the Registry, see “Advance LGL Leukemia Research by Donating to the Registry.”

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