NBCA Presentation eBook

WELCOME TO "THE ALLIANCE"

Thank you for joining The National Blood Clot Al l iance in our dedication to bui ld awareness and community among people who are affected by or at increased risk for blood clots.

Welcome

Visit our YouTube channel for access to hundreds of our educational, life-saving videos.

www.YouTube.com/user/StopTheClot

Vision The National Blood Clot Alliance (NBCA) sees a future in which the number of people suffering and dying from blood clots is reduced significantly.

Our Mission

NBCA is a 501(c)(3), non-profit, voluntary health organization dedicated to advancing the prevention, early diagnosis and successful treatment of life-threatening blood clots such as deep vein thrombosis, pulmonary embolism, and clot- provoked stroke. NBCA works on behalf of people who may be susceptible to blood clots, including, but not limited to, people with clotting disorders, atrial fibrillation, cancer, traumatic injury, and risks related to surgery, lengthy immobility, child birth and birth control. NBCA accomplishes its mission through programs that build public awareness, educate patients and healthcare professionals, and promote supportive public and private sector policy.

Our Programs

Stop the Clot, Spread the Word®

NBCA offers a supportive community for patients, providing the opportunity to share their story , learn from the experience of others and form personal connections with one another through NBCA’s online peer support group .

NBCA's signature public awareness initiative -

developed in cooperation with the Centers for Disease Control and Prevention, reached hundreds of millions of people in recent years with potentially life-saving information about blood clot risks, signs, symptoms and prevention, as well as information specific to the major risk factors for blood clots, including hospitalization, pregnancy and cancer.

NBCA offers resources for healthcare professionals , including a no-cost and accredited online curriculum, Stop the Clot® – What Every Healthcare Professional Needs to Know .

NBCA’s Women & Blood Clots program, established in partnership with the Alexandra L. Rowan Memorial Foundation, is focused on the risk of blood clots among women at

various life stages, including birth control and family planning, pregnancy and childbirth, and the treatment of menopause symptoms.

NBCA’s Sports & Wellness provides support and resources for athletes and addresses the unique risks, signs, symptoms, and

recovery journey for athletes of all levels.

Research & Partnerships

This work will encourage the use of evidence-based educational tools for the public, those at increased risk for VTE, as well as training for healthcare providers with the support of the CDC’s planned public health webinar series. NBCA is participating in a project with the Centers for Disease Control and Prevention to improve utilization of venous thromboembolism (VTE) risk assessment models and identify barriers to implementing new technologies, such as natural language processing in the diagnosis of VTE. Centers for Disease Control and Prevention Five-Year Cooperative Agreement with the

The project will work with the Henry Ford Health System to ensure appropriate data recording across approximately 12 MASAB hospital organizations, as well as assist with the publication of a review of data and identify the best practices upon completion of the database. NBCA is collaborating with the Association of University Centers on Disabilities (AUCD) and NBCA's Medical & Scientific Advisory Board (MASAB) to develop an online database for gathering and analyzing information regarding the prevalence of blood clots in COVID-19 patients using data on positive adults, pediatric hospitalized, ICU and post- discharge settings. University Centers on Disabilities Sub Award Two-Year Grant with the Association of

Disability-Bristol Myers Squibb Foundation Two-Year Grant with the American Association on Health and The purpose of the project is to improve the vascular health of adults with physical disabilities and mobility limitations (PDML), particularly as it relates to VTE. A special panel consisting of health experts, disability advocates, health care providers and insurance experts will assist the project. They will convert VTE research findings into actionable forms for specific end users, as well as advising on the dissemination and utilization of the modified findings. The project involves a multi-site pilot embedded case study assessing the impact of customized knowledge translation, transfer, and utilization (KTTU) activities in increasing VTE awareness and knowledge, patient activation, and clinical outcomes among people with PDML, personal care attendants or direct care workers, and health care providers.

Women’s Health Grant – Funding the Expansion of NBCA’s

Thrombophilia Resources

Women’s Health will continue to be among the areas of central focus for NBCA in 2021-2022 due to the increased risk factors women face and the alarming mortality rates we are seeing in the US. NBCA is building out the existing thrombophilia resources with a one-year program focused on women’s health issues relevant to thrombophilia patients. Thanks to an educational grant provided by Grifols, the program contains the expansion of existing web-based resources, including a pregnancy and thrombophilia video, and the development of a quarterly meeting series focused on women’s health issues relevant to various clotting disorders, such as hereditary antithrombin deficiency (hATd).

The project is aimed at reducing health disparities and improving health outcomes among Black individuals affected by potentially life-threatening blood clots in rural Mississippi. NBCA is participating in a quality improvement project led by MediCom Worldwide and in partnership with the Mississippi State Medical Association, Mississippi Hospital Association and the Mississippi Business Group on Health. Medicom Worldwide Equality Improvement by

Our Reach

Our website received more than 3 million visits over the last year Almost 500,000 people have watched a video on our YouTube channel Our Facebook, Twitter, Instagram, and Pinterest have a combined following of almost 50,000 We have 8,397 engaged as members of our online support group, powered by Inspire

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We have nearly 16,000 people subscribed to our monthly e-newsletter

The Continued Need

A STAGGERING 25% OF GLOBAL DEATHS ARE RELATED TO BLOOD CLOTS

Blood clots do not discriminate. They can and do affect everyone: From children to senior citizens, professional athletes to mothers, women and men. No one is immune. In fact, nearly one million people each year suffer a blood clot in the United States alone. Every six minutes someone in the United States dies of a blood clot, or 274 people each day – annually, that’s the entire population of Green Bay, Wisconsin. Each year, more people lose their lives to blood clots than AIDS, breast cancer, and motor vehicle accidents combined. 30% of blood clots are unprovoked, occurring without any identifiable risk factor. Blood clots cost our nation up to $10 billion dollars each year. Yet, despite these facts, study after study has shown that fewer than one in four people have any recognition of blood clots or their signs and symptoms.

NBCA Board of Directors

Auditor Mitchell Wiggins VA

Medical and Scientific Advisory Board

NBCA STAFF

Accounting Capital Hill Management Services NY and NC

Tarin Patrikis Director of Development & Regional Affairs Boston, MA

Lisa Fullam Director of Communications & Health Marketing Scottsdale, AZ

Sara Wyen Manager, Communications & Health Marketing Columbus, OH

Laura Park Administrative Assistant Canton, MA

NBCA Board of Directors

Name

Location

Description

Leslie Lake - Board Chair Mimi MacKinnon - Vice Chair Teresa Bordeaux - Treasurer Kay Holcombe - Secretary Evan Brovender - Audit Chair Joe Harouni - Chair Tech Committee Elliott Haut, MD, PhD, FACS John Lasker Jessica McElroy Miriam Parel - Chair Development Kim Said Charles Sano, Chair Sports &

NY NY NC MD PA NY MD CT NY VA CA FL NJ MI CA OH

Patient Patient Caregiver Patient Family Member Impacted Patient Trauma Surgeon, VTE Expert Patient Patient Lay Person-Friend Impacted Family Member Impacted Patient Patient Family Member Impacted Patient MASAB Chair, VTE Expert

Wellness Institute Traci Wilkes Smith Sara Wassenaar Michele Wilson Alok Khorana, MD

Stay Connected

Address: National Blood Clot Alliance PO Box 825687 Philadelphia, PA 19182-5687

Phone: 703.935.8845 Toll Free: 877.4.NO.CLOT

Website: www.stoptheclot.org

Social Media: @StopTheClot

We appreciate your interaction with our social media! Every like, retweet, heart, and comment helps us in our mission to spread the word!

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