The VHL Alliance has just recognized Loyola Medicine as a new VHL Clinical Care Center. Von Hippel-Lindau (VHL) disease patients require multidisciplinary care for their complex and rare condition, and Loyola can provide just that along with needed emotional support.
The VHL Alliance
The VHL Alliance (VHLA) is a nonprofit organization which was first founded in 1993. It aims to support patients living with von Hippel-Lindau disease as well as support their caregivers, those researching the condition, medical professionals, and physicians.
The organization strives to improve research for VHL including improved treatments, quality of life, and outcomes for patients. Additionally, they work to spread awareness for this rare disease.
VHLA is currently the top funder of research for this condition. They have been able to donate more than 2.6 million dollars to support research studies for VHL.
VHL
VHL is a rare, inherited condition which causes a tumors and cysts throughout the body. In fact, patients can experience tumors in up to 10 different places. It looks different on everyone, and tumors can grow in unpredictable ways.
All people are naturally born with two different copies of the VHL gene. However, when the VHL gene is altered, the disease occurs.
Depending on where the tumors grow, they can cause different kinds of complications. Additionally, the size of the tumors can determine outcomes. Some of these complications can be life threatening.
Although VHL tumors are not cancerous, VHL patients are at a higher chance of developing certain kinds of cancers such as kidney cancer, pancreatic cancer, and cancer in the adrenal gland.
Due to the different presentations of VHL, care requires a team of multidisciplinary experts who know different kinds of tumor systems.
Loyola Medicine
Loyola Medicine believes in comprehensive care as well as a personalized treatment plan for each individual patient.
Each patient is provided a patient navigator to help them through their treatment process, document changes in their needs, and book appointments with the appropriate physicians and specialists.
For these reasons, the VHL Alliance is confident in Loyola Medicine’s ability to provide great care to VHL patients both in Chicago and beyond.
You can read more about this care center for VHL here.
