Clot Connect, www.clotconnect.org, is an education outreach program at the University of North Carolina at Chapel Hill (UNC) which serves as a comprehensive clearinghouse for reliable, clinically-relevant information on the prevention, diagnosis and treatment of blood clots called deep vein thrombosis (DVT) and pulmonary embolism (PE). It is the only education program of its kind in the U.S.
Clot Connect currently reaches over 30,000 people each month with educational resources, and it is growing. Clot Connect is supported by 1 staff position and a team of dedicated volunteers. We’d like for you to meet some of the people passionate about reaching patients and healthcare professionals with life-saving and life-changing blood clot education.
Beth Waldron, MA
Beth Waldron is the Clot Connect Program Director, and is a member of the UNC Hemophilia and Thrombosis Center and McAllister Heart Institute. She directs Clot Connect’s day-to-day operations and is responsible for all aspects of program management and audience engagement, including patient and provider communications, education material development, fundraising, media relations, social media and website development. A national advocate for venous thromboembolism and patient engagement, she serves on a number of federal workgroups striving to improve patient care, including: US Health and Human Services Partnership for Patients Speaker Bureau, US Health and Human Services PfP committee on Patient and Family Engagement, National Priorities Partnership-National Quality Forum, and the National Quality Forum Affinity Group on Patient and Family Engagement.
"My professional work in blood clot education stems from a very personal health crisis. In 2003 at the age of 34, I experienced deep vein thrombosis (DVT) and pulmonary embolism (PE). My clots were initially not diagnosed correctly. Neither I nor my healthcare provider recognized my symptoms as due to a blood clot. The leg pain associated with my DVT was initially attributed to a pulled muscle. The chest pain and shortness of breath associated with my PE were initially diagnosed as a respiratory infection for which I was prescribed antibiotics. Only after a second near-fatal PE episode were the correct diagnostic tests performed and an accurate DVT and PE diagnosis made.
After my clotting episode, I learned that I have a thrombophilia (clotting disorder). I am homozygous for the Factor V Leiden genetic mutation, which greatly increased my clot risk. Today, I remain on long-term anticoagulation (blood thinners).
As a result of my personal experience with blood clots, I am now heavily involved professionally in promoting greater education for both patients and healthcare professionals. It is my personal belief that it takes an informed patient and an informed healthcare professional working together for the most optimal health outcome. This is the cornerstone of the work I do now for Clot Connect, connecting patients and healthcare professionals to reliable information on the diagnosis, treatment and prevention of blood clots (DVT and PE)."
Stephan Moll, MD
Stephan Moll, MD provides medical direction for Clot Connect and is a faculty member in the University of North Carolina Department of Medicine, Division of Hematology-Oncology in the rank of Associate Professor. He is a member of the UNC Hemophilia and Thrombosis Center and the McAllister Heart Institute. His main field of clinical, research and educational activity is coagulation, specifically thrombosis, thrombophilia, and anticoagulation. He was the principal investigator at UNC of the 5 year CDC grant that enabled the creation of UNC’s Clot Connect information program in 2010. From 1999 to 2006 he was involved in web-based patient education by writing for the information website www.fvleiden.org; he was a co-founder in 2003 and a member of the volunteer board of directors from 2003 to 2006 of the national non-profit patient organization NBCA (National Blood Clot Alliance; www.stoptheclot.org), and from 2006-2008 the first medical director of NBCA’s Medical and Scientific Advisory Board.
From Dr. Moll:
"I want to help provide accurate, clinically relevant, and evidence-based medical information to patients, so that they are empowered to understand their clotting problems and the management thereof. I believe that a better informed and educated patient has better health outcomes and feels more in control of his/her disorder. In addition, I want health care professionals who look after patients with blood clots to be optimally informed, be able to find the clinically relevant information, and to stay up-to-date. These goals I have pursued over the years through my involvement in patient education activities and organizations (www.fvleiden.org at first, then the National Blood Clot Alliance, now Clot Connect), as well as health care professional education events and organizations.
I helped found Clot Connect because I saw that there is a need in the U.S. for an education forum that provides clinically relevant, academically solid (evidence-based), pharmaceutical industry-independent information to patients and health care professionals. A comprehensive, yet nimble and fast-reacting program, Clot Connect is a clearinghouse for such information. The success (the steadily increasing number of patients and health care professionals utilizing Clot Connect) confirms to us that this information model is a good one and addresses a need.
The current challenge facing Clot Connect is: many want and need information and education, yet few are able or willing to pay for it. We desire to provide patients and health care professionals with a free, clinically relevant information resource. However, without funding, information cannot be provided, let alone be expanded. That is the main struggle we face. The need for such a program clearly is there."
Tom Hogan, is the Head Online Patient Support Group Moderator for ClotConnect.Org. Tom has a long history of patient advocacy and volunteers his time supporting blood clot patients in numerous online forums and through nonprofit organizations.
"I had served 10 years in the Navy's Submarine Community when I had my first unexplained DVT (1992). For a week the Naval Hospital thought I had a pulled or torn muscle from a previous Mountain Bike Race. I was prescribed ibuprofen and told if it got worse to come back. One morning I woke up and the leg was swollen pretty badly and I could not stand to bear weight on it. It was then that the hospital realized it wasn't a typical sports injury. They performed a venogram which confirmed I had a series of clots throughout my leg. While hospitalized they also had concerns about a high resting heart rate so ordered a lung scan which later confirmed I had additionally suffered a pulmonary embolism.
Six months of Coumadin therapy and I was returned to full duty. Then, in 1995, I suffered another DVT (opposite leg). The hospital was quick to diagnose this one due to my previous medical history.
In 1996 the Navy was potentially going to medically discharge me. I had asked to try to find a reason why I kept developing blood clots before any decisions were made. In January of 1996 I was diagnosed with Factor V Leiden (homozygous) clotting disorder and was also found to have elevated homoysteine levels.
Trying to stay in the military was an uphill battle. I was the first patient the Navy had seen who was diagnosed with this clotting disorder. Eventually I won and was able to remain in the Navy until I retired in 2002 after 20 years of service. In 2003, I was asked to become a member of a Steering Committee working with the Centers for Disease Control and Prevention (CDC) that was addressing the needs of the blood clot community, and was a cofounder of the National Blood Clot Alliance and worked with that organization for over eight years. This brings me to the present where I am now the Head Patient Support Forum Moderator for Clot Connect.
I encourage you all to share your stories, ask questions, and share. The patient community and medical community can learn from each other, and patient forums are one of the best ways to do this. As Clot Connect evolves, we hope that our patient support forum will provide some of the answers and support people are looking for."
- Lend your experience: Support other patients in our online support forum.
- Fundraise: Clot Connect's educational outreach is funded through donations and grants; the program currently receives no federal, state or university financial support. Please consider supporting Clot Connect's work by by making a tax-deductible financial contribution or by hosting a fundraising event.
- For more information, contact us.
- Lend your expertise: Help answer patient questions in our online support forum.
- Spread knowledge: Clot Connect welcomes submissions of medical content to its educational blogs, one written for patients, one for healthcare professionals. Submissions of content should reflect evidence-based clinical approaches, with appropriate medical journal citations included when possible.
- For more information, contact us.