ViroPharma launches online community for teens and adults with hereditary angioedema

Mar 21 2011

ViroPharma Incorporated (Nasdaq: VPHM) today announced the launch of "HAE and Me," an online community that unites teens and adults with hereditary angioedema (HAE) through shared experiences to help them better manage their disease.  The website, www.HAEandMe.com, features information about HAE, video stories, and first-hand tips from patients, as well as expert advice about living with this rare and potentially life-threatening swelling disease.

"In speaking with patients, we've learned how helpful it is for them to connect with and learn from each other, because one person's experience can inspire countless others," said Kristina Broadbelt, ViroPharma's associate director of global public relations and advocacy.  "'HAE and Me' is designed to address that need by uniting and educating the HAE community and reminding patients that they're not alone."

"HAE and Me" features a dedicated section for "Gen HAE," or teens and young adults with HAE - a patient population with unique needs.  While trying to forge their own identity, a young person with HAE has the added challenge of dealing with a chronic and debilitating disease in which symptoms often begin to manifest or worsen during adolescence.  The content was developed with input from teens with HAE, and focuses on how to overcome common issues and experiences Gen HAE patients may face, like fitting in with their peers, dating, and being involved in extracurricular activities and sports.

"GenHAE" also gives visitors who have questions about navigating life with a rare disease like HAE the opportunity to submit them to Dr. Miriam Kaufman, professor in the Department of Pediatrics at the University of Toronto and the Division of Adolescent Medicine at The Hospital for Sick Children in Toronto.  Dr. Kaufman, a pediatrician who specializes in adolescents with chronic conditions like HAE, has authored a number of books including "Easy For You To Say: Q and A's for Teens Living With Chronic Illness or Disability," focused on topics that matter the most to teens, including family relationships, friends and dating, school and work, and sexuality.

"Being young can be hard enough, but having something that makes you feel different can be truly alienating," said Dr. David Hurewitz, an allergist/immunologist at the Allergy Clinic of Tulsa in Tulsa, Okla.  "Symptoms of HAE often show up for the first time, or get more frequent and severe, during adolescence, leaving young people searching for answers about how to cope.  'Gen HAE' is the only resource of its kind, and I believe can be quite helpful for young people to navigate important issues they may face growing up with HAE."  

"HAE and Me" also links to www.LetsTalkHAE.com, the hub for a physician education program that unites disparate specialist organizations to work together to help advance the standard of care for HAE patients, as well as a new documentary film called 'Swell', which showcases the lives of people living with HAE, providing a first-hand look at what it is like to suffer from the disease and how it affects family, friends and loved ones.

"HAE and Me"

"HAE and Me" is a comprehensive online community that unites people with HAE of all ages through shared experiences to help them better manage their disease.  

The unbranded website, www.HAEandMe.com, and the "Gen HAE" section for teens and young adults living with HAE, provide targeted information to people with HAE, including:

• HAE disease background information, including facts about symptoms, causes, pathophysiology, diagnosing, and managing HAE
• Video and written profiles of people with HAE and physicians
• Tips and advice from people with HAE and physicians
• Quarterly physician spotlights
• Monthly polls
• Answers to frequently asked questions about HAE
• Upcoming events

"Gen HAE," which was developed with input from teens and young adults living with HAE, focuses specifically on the important issues young people growing up with chronic conditions like HAE may face.  Unique to "Gen HAE," visitors can also submit questions to Dr. Miriam Kaufman, a pediatrician who has worked for 27 years with young people who have chronic conditions.  

Information on "HAE and Me" will be regularly updated to include new information and interactive elements, potentially including an interactive map to visually link HAE patients, and a calendar of relevant events around the country.  "HAE and Me" will also expand to include targeted content for other sub-communities of people affected by HAE, such as parents or caregivers.