Dec. 28, 2015
TOPIC: Featured News
Posted by Christina Jensen
The Cure HHT Foundation, is a non-profit organization dedicated to increasing public and professional awareness and understanding of hereditary hemorrhagic telangiectasia (HHT), also known as Osler Weber Rendu syndrome. This is an inherited vascular (blood vessel) disorder characterized by direct connections between arteries and veins with no intervening capillaries, or by the dilation of small vessels. These telangiectases occur in various organs of the body such as the lungs, brain, liver, GI tract, nose, mouth, lips, fingers and toes. The HHT Foundation supports ongoing medical research into the causes, prevention, and treatment of HHT, and offers patient education materials and referrals from a web site and through a toll-free number and an international number. Educational information for medical professionals and for patients is available by mail, via the web site and by newsletter.
1.) What does it mean to you personally to be a patient organization serving the rare community?
How can you put something like that into words? It means everything. The Cure HHT staff never forget that they are representing the 1.4 million people worldwide living with HHT every day. We are all – this organization, the physicians and researchers, patients and supporters – dedicated to finding a cure for HHT within this lifetime. Every day is another chance to come together and work toward that brighter future, for those currently living with HHTand those who will be.
2.) What do you find your patient community values most from your organization?
Information – our community is very dedicated to being advocates for their own health, but in order to do so, they need the right information. The new HHTWebinar Series, launched in 2014, has been a huge hit, featuring doctors from all over the world discussing specific HHT topics that apply to the everyday lives of our community. And the bi-yearly HHT Family and Patient Conference, which includes a whole weekend of seminars and workshops, is something people start waiting for as soon as the current one is over. The information learned from these larger events is then reinforced through monthly e-newsletters and quarterly print newsletters.
3.) What are some of the challenges your organization has faced?
The largest challenge the Cure HHT organization and community consistently faces is the lack of awareness. Though every 1 in 5,000 people have HHT, only 10 percent of people are diagnosed. It’s a constant struggle for our community to find a doctor that knows what HHT is or is willing to be educated on the topic. In response, we’ve established and recently updated the HHT Physician’s Directory; founded 21 HHT Centers of Excellence in North America (and are still growing); host annual international conferences; and dedicate campaigns specifically to strengthening HHT awareness.
4.) What’s been your most successful awareness campaign and/or fundraising event?
The Cure HHT Team considers every event successful in its own way, but the recent HHT Team Walk in Georgia was the largest awareness event held since the organization was founded 25 years ago. More than 150 people, along with physicians from the local HHT center, came out in October 2015 demanding attention for the HHT mission. Together, they raised more than $20,000, garnered support from the local media and made lasting connections with fellow patients. It was an honor to see such an event come together.
P.O. Box 329
Monkton, MD 21111 USA