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Surveying Patients’ Experiences and Prespectives on Blood Clot Care

From Survey to Science: How Patient Experiences are Shaping Blood Clot Care

In 2023, NBCA and our Council of Emerging Researchers in Thrombosis (CERT) launched the first large-scale, international survey to capture…

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2025 Fun Run Graphics (500 x 500 px) (1)

NBCA Hosting 6th Annual Fun Run in Honor of World Thrombosis Day

Did you know that World Thrombosis Day takes place every year on October 13 to turn the world’s attention to…

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Advancing blood clot awareness, prevention, diagnosis & treatments to #stoptheclot. Submit your story @ link below ⬇️ Our podcast: Taking a Breath 🎙️

✨ Your voice is shaping blood clot care! In 202

✨ Your voice is shaping blood clot care!

In 2023, NBCA launched the first large-scale, international survey to capture blood clot patient experiences and identify gaps in care.

We continue to be grateful to the more than 1,050 survivors who took the survey. Your voice is being heard and prioritized by the medical community at the highest levels. The data has been:

✅ Presented at Argon Medical's Venous Experts Symposium last week
✅ Listed in ScienceDirect, a platform used by hospitals, universities, and researchers around the world
✅ Presented at the 2024 American Society of Hematology annual conference
✅ Published in the peer-reviewed journal Blood Vessels, Thrombosis and Hemostasis

Key findings:

✅ Only 55% were satisfied with how their diagnosis was explained
✅ 1 in 3 reported misdiagnosis, often requiring multiple visits
✅ Just 15% received written/electronic info at diagnosis. Most wanted guidance on recurrence, mental health, prevention strategies, and patient support, but only 2% received this information.

Read more: 👉Link in bio.

#StopTheClot #BloodClots #BloodClotSurvey #BloodClotEducation #PEPSurvey #CERT #ASH2024

🌍 Patient safety from the start! Today is World

🌍 Patient safety from the start! Today is World Patient Safety Day, and this year’s theme highlights pediatric patient safety.

Did you know that children, especially those in hospitals with central lines, cancer treatment, or heart conditions, can develop DVT or PE? Symptoms are often missed because few people expect clots in kids.

Help keep kids safe: know the signs (new leg swelling/pain or sudden chest pain/shortness of breath), ask about clot prevention during hospital stays, and join our October PEP Talk on children and blood clots on Oct. 14 at 7 p.m. ET. Register: Link in bio!

#StopTheClot #BloodClots #WorldPatientSafetyDay #PediatricVTE

As Dr. Jean Connors says in this PEP Talk from las

As Dr. Jean Connors says in this PEP Talk from last year, every bit of exercise counts when you’re recovering from a blood clot.

If you’re a blood clot survivor, a great way to ease back into exercise or add more movement to your day is our NBCA’s 6th Annual Fun Run for World Thrombosis Day.

Anywhere and anytime between October 10-13, you can choose to run, walk or roll a distance of 1 mile, 5K, or 10K in commemoration of World Thrombosis Day (October 13).

It’s a perfect way to stay active, connect with others, and honor your journey to recovery. Let’s keep moving together! 🏃‍♀️🏃‍♂️

Learn more and register: 🔗 in bio!

#StopTheClot #NBCAFunRun #BloodClotAwareness #WorldThrombosisDay

Blood clots aren’t just an adult problem. In hos

Blood clots aren’t just an adult problem. In hospitals, as many as 1 in 200 children may develop a clot, most often those with central lines, cancer treatment, or heart conditions.

Because few people expect blood clots in kids, symptoms like swelling, pain, or shortness of breath are often missed or attributed to more common conditions.

Join our October PEP Talk to learn how clots happen in children, what signs to watch for, and what parents and providers can do to protect kids.

Our guest expert is Neil Goldenberg, MD, PhD, a leading pediatric hematologist, clinical researcher in childhood blood clots, and member of our Medical and Scientific Advisory Board.

We hope to see you Tuesday, Oct. 14 at 7 p.m. ET! Register: 🔗 in bio.

#StopTheClot #BloodClots #PEPTalk #PediatricVTE #BloodClotAwareness

With tingling and swelling in her right leg, then

With tingling and swelling in her right leg, then sharp chest pain with every breath, Roxanne knew something was wrong. But urgent care and the ER both failed to uncover the problem. She advocated for a CT scan, which revealed a PE.

Roxanne is grateful to be here and determined to raise awareness so others get answers sooner.

More stories: Link in bio.

#StopTheClot #StopTheClotStory #BloodClots #PulmonaryEmbolism #BloodClotAwareness

September is National Atrial Fibrillation (AFib) A

September is National Atrial Fibrillation (AFib) Awareness Month.

AFib is the most common type of irregular heartbeat, affecting more than 2.6 million Americans. When your heart rhythm becomes irregular, blood doesn’t flow the way it should. This can cause blood to pool in the heart, raising the risk of dangerous blood clots, stroke, and even heart failure.

AFib isn’t always obvious. Some people feel racing, fluttering, or pounding in their chest, while others have no symptoms at all. That’s why awareness and early detection are key.

Learn the facts, talk with your healthcare provider, and protect your heart health.

More at the link in bio.

#StopTheClot #BloodClots #AFib #AtrialFibrillation #AFibAwarenessMonth

To show our gratitude for everyone who has support

To show our gratitude for everyone who has supported our summer fundraising campaign, we’re giving away Stop the Clot gear every week through September 30!

📣 Our fifth winner is Julie Haas of Onalaska, WI, who gets an NBCA boat bag. Congratulations!

You can enter TWO ways:

1️⃣ Donate: Every donation = 1 entry. Already donated? You’re in! Want better odds? Make another gift to boost your chances!

2️⃣ Share & Like: Share and like this post = 1 entry.

Giveaway Details:

Winners are announced every Friday.

All donations support NBCA’s mission to raise awareness, provide patient support, and save lives.

Thanks to our matching campaign, your gift goes 2X s far through September 30. (It could go 3X as far if your employer has a matching gift program!)

Don't miss your chance to win Stop the Clot swag and make a meaningful impact.

👇 Let us know you entered by commenting below!

🎁 Donate: Link in bio!

#StopTheClot #BloodClots #FundraisingFriday #BloodClotAwareness

After a short flight home from LA, Rachel felt wha

After a short flight home from LA, Rachel felt what she thought was a panic attack. In the ER, her 140 bpm resting heart rate prompted a pulmonary embolism test. Her message: don’t dismiss symptoms. Stay hydrated, move, and enjoy life.

More stories: Link in bio.

🎮 Today is National Video Games Day, but before

🎮 Today is National Video Games Day, but before you immerse yourself in your favorite game, make sure you are aware of your risk for blood clots.

Sitting and playing video games for extended periods of time, generally more than four hours, is a significant risk factor for blood clots in your legs (deep vein thrombosis or DVT), which can lead to a pulmonary embolism (PE), or a blood clot in the lungs, which is life-threatening.

Research has shown that people with no additional risk factors other than prolonged physical inactivity have developed “gamer’s thrombosis.” The risk is even higher in people with additional risk factors, including smoking, obesity and genetic conditions.

Please share this post as a reminder to stay hydrated, stand up, walk around, and get that blood flowing every 30-60 minutes!

Learn more about your risk for blood clots: link in bio.

#StopTheClot #BloodClots #GamersThrombosis #NationalVideoGamesDay #BloodClotAwareness

When her father died of a pulmonary embolism last

When her father died of a pulmonary embolism last year, Shannon Harris, PhD, RHIA turned grief into action.

As lead faculty and assistant professor of Health Information Management at the University of Arizona Global Campus, she knows awareness saves lives. Shannon became an NBCA Community Thrombassador, partnered with local media, and most recently organized a Blood Clot Awareness Community Walk in Opelika, AL, sharing the message on WSFA 12 News.

Volunteers like Shannon are the heart of our mission. Thank you, Shannon, for all you do to raise awareness. 💙

#StopTheClot #BloodClots #BloodClotAwareness #Thrombassador

Earlier this year, federal cuts reduced funding fo

Earlier this year, federal cuts reduced funding for blood clot education and public awareness. We turned to our community to help fill this gap, and you stepped up in a huge way. Together, we’ve raised nearly 60% of our ambitious $100,000 match goal.

With three weeks left in our campaign, we’re asking those who haven’t yet donated to please consider paying it forward. If NBCA resources have helped you and your loved ones, will you help ensure that others can benefit from them, too?

NBCA Volunteer President Leslie Lake will match every donation dollar for dollar through September 30, doubling your impact.

Donate today: Link in bio.

P.S. Can’t give right now? Sharing this post helps more than you know!

#StopTheClot #BloodClots #BloodClotAwareness #BloodClotFunding

Thank you to everyone who joined last night’s PE

Thank you to everyone who joined last night’s PEP Talk on navigating a new blood clot diagnosis with Diane Wirth, nurse practitioner at @grady.hospital in Atlanta.

In this clip, Diane answers questions submitted by members of our community about blood clot recovery, including the timeline in which most people feel normal again and how long it takes for a clot to resolve.

Watch the full recording to hear Diane answer more questions and explain the basics of blood clots: 🔗 in bio.

Join us for our next PEP Talk on Tuesday, Oct. 14 at 7 p.m. on children and blood clots. Register at the 🔗 in bio.

If you’ve benefited from our PEP Talks or other resources, please consider making a donation to our summer fundraising campaign. All federal funding for blood clot education and public health awareness has been eliminated, and we need help to fill this gap.

Your donation will be matched through Sept. 30. If your employer matches charitable donations (many do!) your donation can be tripled.

Thank you to all who have donated. 🔗 in bio.

#StopTheClot #PEPTalk

After experiencing a blood clot, many patients are

After experiencing a blood clot, many patients are left unsure about the best way to manage their care. A recent survey of physicians may shed light on why.

The National Blood Clot Alliance (NBCA) is proud to be part of the Get Out the Clot (GOTC) campaign, an initiative focused on identifying and closing gaps in blood clot patient care, which recently surveyed about 270 healthcare professionals who treat blood clot patients.

Key findings:

✅ 56% of interventional physicians feel their hospital protocols give clear guidance on what to do for pulmonary embolism, beyond just giving blood thinners, and care often differs even for patients with the same risk level. For DVT, this drops to just 39%.
✅ Nearly half of DVT patients are treated with blood-thinning medication alone, yet 71% of physicians want to see their hospital expand the use of thrombectomy (clot-removal procedure) for DVT.
✅ 35% of physicians say treatment decisions are together across specialties, showing that collaboration amongst physicians continues to be limited.

Why it matters: Blood clots affect up to 900,000 Americans annually, leading to about 100,000 deaths. The results from this survey underscore the urgent need for hospitals to standardize care and offer advanced treatment options, multi-disciplinary collaboration, and educate patients and clinicians so people get the right treatment more reliably.

➡️ Visit GetOutTheClot.com or check out the link in bio to learn more.

@penumbra.inc @pertconsortium @isth_official @venousforum @

HAPPENING TONIGHT: Our September PEP Talk kicks of

HAPPENING TONIGHT: Our September PEP Talk kicks off at 7 p.m. ET, and it’s all about navigating a new blood clot diagnosis. We’ll cover recovery, blood thinners, follow-up care, and more.

Can’t join live? Be sure to register anyway to get the recording sent to your inbox.

Register: Link in bio.

#StopTheClot #BloodClots #VTE #PEPTalk #BloodClotPatient #BloodClotSupportGroup #BloodClotAwareness #BloodClotWebinar

HAPPENING TOMORROW: Join us for our next PEP Talk

HAPPENING TOMORROW: Join us for our next PEP Talk on Tuesday, Sept. 9 at 7 p.m. ET for a foundational-level session for people who are navigating life after a DVT or PE. We’ll cover key topics like blood thinners, recovery, follow-up care, and returning to daily life.

Plus, we’ll walk through some of the most important questions to ask your doctor after a clot, like:

✔️ How long will I be on a blood thinner?

✔️ When can I start exercising again?

✔️ How are DVT and PE connected?

Whether you were diagnosed days or months ago, this conversation can help you feel more confident at your next appointment and more in control of your care.

🔗 Register now: Link in bio.

#StopTheClot #PEPTalk #BloodClots #BloodClotAwareness #NewBloodClotDiagnosis

Did you know that World Thrombosis Day takes place

Did you know that World Thrombosis Day takes place every year on October 13 to turn the world’s attention to blood clots?

Blood clots can be fatal, but they are also preventable. Help us spread awareness by participating in NBCA’s sixth annual virtual Fun Run (or walk) between October 10-13 to commemorate World Thrombosis Day.

Here are the details:

- Virtual walk/run celebrating World Thrombosis Day
- Pick your distance: 10K, 5K, or 1 mile
- Registration is $35
- Complete the course of your choosing anytime between October 10-13

Super-charge your impact by creating your own fundraising page and encouraging people in our life to support you. All registrations and donations are 100% tax-deductible!

💥 Your registration fee and any funds you raise before Sept. 30 will count toward our summer fundraising campaign and will be matched! 💥

🔗 Register: Link in bio!

#StopTheClot #NBCAFunRun #BloodClotAwareness #WorldThrombosisDay

After weeks of cough, back pain, and shortness of

After weeks of cough, back pain, and shortness of breath, Judy nearly collapsed in the shower. ER tests found multiple blood clots in both lungs with right-heart strain. She spent three days in the hospital, started lifelong blood thinners, and later learned recovery includes managing anxiety. Her message: if you feel “off,” get checked out.

👉 More stories: Link in bio.

#StopTheClot #StopTheClotStory #BloodClots #PulmonaryEmbolism #BloodClotAwareness

September is Healthy Aging Month. Blood clot risk

September is Healthy Aging Month. Blood clot risk increases with age and is heightened by hospitalization, surgery, cancer, and reduced mobility. At the same time, bleeding risk, especially for those on blood thinners, must be considered.

In our August PEP Talk on blood clots and aging, Dr. Anna Parks, hematologist at the University of Utah, discusses the challenges of balancing blood clotting and bleeding risks in older adults.

“The problem with aging is that it’s a double-edged sword,” she says in this clip. “Your clotting risk goes up, but your bleeding risk also goes up.”

This Healthy Aging Month, watch the full recording to learn how to protect yourself or a loved one: Link in bio.

#StopTheClot #BloodClots #HealthyAgingMonth #BloodClotPrevention #BloodClotAwareness

🎉We have our Week 4 winner! To show our grati

🎉We have our Week 4 winner!

To show our gratitude for everyone who has supported our summer fundraising campaign, we’re giving away Stop the Clot gear every week through September 30!

📣 Our fourth winner is Lida Sethi of Columbus, OH, who gets an NBCA boat bag. Congratulations!

You can enter TWO ways:

1️⃣ Donate: Every donation = 1 entry. Already donated? You’re in! Want better odds? Make another gift to boost your chances!

2️⃣ Share & Like: Share and like this post = 1 entry.

Giveaway Details:

Winners are announced every Friday.

All donations support NBCA’s mission to raise awareness, provide patient support, and save lives.

Thanks to our matching campaign, your gift goes 2X s far through September 30. (It could go 3X as far if your employer has a matching gift program!)

Don't miss your chance to win Stop the Clot swag and make a meaningful impact.

👇 Let us know you entered by commenting below!

🎁 Donate: Link in bio.

#StopTheClot #BloodClots #FundraisingFriday #BloodClotAwareness

Elizabeth has contended with three types of blood

Elizabeth has contended with three types of blood clots—DVT, superficial thrombophlebitis, and CVST—yet she’s tested negative for factor V Leiden, which runs in her family. After a clot-provoked stroke in June 2025, she’s rebuilding with fatigue and memory loss, and she’s grateful.

More blood clot patient stories: Link in bio.

#StopTheClot #StopTheClotStory #BloodClots #DVT #CVST #BloodClotAwareness

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