VHL Family Alliance Opens Spanish Speaking Information Service

VHL Family Alliance Opens Spanish Speaking Information Service

New Hotline is Now Available To Understand Rare Disease. Living with VHL – Don’t Let It Surprise You


BOSTON, MA–(HISPANIC PR WIRE – U.S. Newswire)–September 10, 2003–The VHL Family Alliance, the largest international organization dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by Von Hippel-Lindau Disease, announced a new information hotline service for Spanish speaking patients, their families and friends in the United States.

The VHL Family Alliance provides information for families and physicians about this disorder. Local family support chapters exist in regions of the U.S. and in 71 other nations on five continents, with highest growth currently in Spanish-speaking countries.

Maria Shipton, Chairperson of the Board, formally announced this new Spanish speaking service. “The VHL Family Alliance has always been interested in lowering barriers to critical care information. This new hotline brings our extensive network of medical professionals to an important population.” Founder of the VHL Family Alliance Joyce Graff spent a great deal of time building an international network of medical specialists who work with the Alliance. “We are delighted to be offering this critical information lifeline to our Spanish speaking friends. We are in touch with more than 14,000 affected people and we want to extend our network to even more individuals and families,” said Ms. Graff.

Hotline services in Spanish language can be accessed in the United States by dialing 1-800-767-4VHL. The menu of choices is in Spanish and English. Alexandra Morais, a VHL survivor herself, answers the Spanish language hotline.

The VHL Family Alliance also supports interactive e-mail discussion groups and chat rooms — a special place for VHL, in Spanish, English, German or French.

Please see our website for more details at http://www.vhl.org

About Von Hippel-Lindau Disease:

VHL occurs in every ethnic group, everywhere in the world. Over all, about one person in 32,000 in the world has VHL. About 20% are new mutations, and 80% are children of parents who themselves had VHL. Most people with VHL will begin having clinically significant issues in their teens or twenties. About 10% of children can be seen to have eye or adrenal problems before age 10, and a growing number of people are now known to have no clinical problems until their 80’s. VHL can cause eye, brain, and spinal and can lead to kidney cancer.



Sobreviviente y Voluntaria de la Línea de Ayuda

Alexandra Morais (español o inglés),

Teléfono:1-800-767-4845, opción 2


Sobreviviente y Presidenta de la Línea de Ayuda

Altheada Johnson (inglés)

Teléfono: 1-718-636-7822


Fundadora y Directora Ejecutiva

Nombre: Joyce Graff (inglés)

Teléfono: 1-617-277-5667

VHL Family Alliance Opens Spanish Speaking Information Service