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August e-Newsletter

AUGUST E-NEWSLETTER | STAYING CONNECTED IN A VIRTUAL WORLD

A lot has changed since the onset of the COVID-19 pandemic and, for many of us, life may have …

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AUGUST E-NEWSLETTER | SHARING STORIES TO BUILD AWARENESS

For more than 15 years, the National Blood Clot Alliance has been telling your stories – on our …

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Current News

National Blood Clot Alliance (NBCA) Announces Key Medical Leadership Updates to Advance Global Mission Against Venous Thromboembolism

NBCA Announces Key Medical Leadership Updates to Advance Global Mission Against Venous Thromboembolism The National Blood Clot Alliance (NBCA) today…

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If You’re Living with Antiphospholipid Syndrome (APS), Take Our Survey

Antiphospholipid syndrome (APS) is a complex and often misunderstood autoimmune condition. If you have been diagnosed with APS, we invite…

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

❓ Question: Have you had thrombophilia testing?

❓ Question: Have you had thrombophilia testing?

About one-quarter to one-third of people who have had a blood clot test positive for thrombophilia, most often factor V Leiden or the prothrombin gene mutation.

⚠️ Important: Some tests can be distorted while you’re on blood thinners. Timing matters, so talk with your clinician about when to test and which tests are useful for you.

Why test? The value is case-by-case. Results don’t usually change short-term treatment, but may help guide long-term decisions (pregnancy planning or if your risk of recurrence is high).

🔉 Sound off in the comments about your experience with testing, and register for our November PEP Talk: Thrombophilia Testing While on Blood Thinners on Tuesday, Nov. 11 at 7 p.m. ET.

Register: Link in bio.

#StopTheClot #PEPTalk #ThrombophiliaTesting #BloodClots #VTE

"In 2014, while in podiatry school, I went to the

"In 2014, while in podiatry school, I went to the student health center because I felt short or breath and was coughing up blood. The nurse practitioner diagnosed me with bronchitis.

Less than two weeks later, I learned the truth — I had a saddle pulmonary embolism, which means a large blood clot was blocking blood flow to both sides of my lungs. The clot was caused by birth control pills, along with other risk factors like recent travel and my weight.

I needed emergency treatment, including procedure called a mechanical thrombectomy to remove the clot from my leg and another procedure to dissolve the one in my lungs. I also had part of my lung damaged by the clot, called a pulmonary infarction.

I was on a blood thinner, rivaroxaban, for six months after this incident and I have done well since then. I delivered a healthy baby boy in 2023 and took daily blood thinning injections (enoxaparin) without any issues.

I was recently traveling and developed another blood clot in my leg (DVT). As a result, I will need to take blood thinners for life and I am okay with that. I am grateful to be alive.

As a physician, I am more aware of looking for the signs and symptoms of blood clots in my patients. If someone has symptoms that make me suspect a DVT, I don’t hesitate to order an ultrasound to check for it.

I enjoy looking at NBCA’s Instagram page and knowing I am not alone in this battle. There are a lot of people like me and I feel extremely grateful that I made it out alive.

My advice is to listen to your body. You know your body better than anyone else. If you feel the symptoms and are concerned, get checked out."

More stories: Link in bio.

#StopTheClot #StopTheClotStory #BloodClots #BloodClotAwareness

🏅Countdown to race day! In less than two weeks,

🏅Countdown to race day! In less than two weeks, Team Stop the Clot will hit the streets for 2025 TCS New York City Marathon and their training is in high gear.

We’re introducing you to the inspiring runners who are clocking the miles, sharing their stories, and raising funds for NBCA.

🏃‍♀️ Molly Tilton of New York City shares why she’s running on Team Stop the Clot:

“It is a privilege to be running the NYC Marathon in support of Stop the Clot. This cause is deeply personal for my family. With God’s protection, my dad has survived two pulmonary emboli. I feel so grateful to be able to honor my dad's strength by having these little legs run 26.2 miles!”

Leave an supportive comment or donate: Link in bio!

#stoptheclot #teamstoptheclot #bloodclots #nycmarathon #bloodclotawareness

🏃‍➡️ Calling all runners! Join profession

🏃‍➡️ Calling all runners! Join professional runner and pulmonary embolism survivor @SageCanaday and the National Blood Clot Alliance’s @NYCMarathon team for a fun, easy three-mile shakeout run through Central Park the day before the marathon.

You don’t have to be a registered marathon runner to join — all are welcome! No registration fee, just good vibes and community spirit.

🗓️ Saturday, November 1, 2025
🕙 10 a.m. ET
📍 Start and finish: @HOKA store, 579 5th Ave., New York City
🎁 Goodie bags from HOKA + NBCA and NYC bagels! (Limited to the first 50 people.)

Register now to save your spot: 🔗 in bio!

#StopTheClot #NYCMarathon #ShakeoutRun

Clinical trials are reshaping how doctors treat in

Clinical trials are reshaping how doctors treat intermediate-risk pulmonary embolism (PE).

Dr. Parth Rali, director of the Temple University’s Pulmonary Embolism Response Team (PERT) and NBCA volunteer, highlighted at the recent American College of Chest Physicians (CHEST) 2025 Annual Meeting that several new clinical trials are testing innovative treatment approaches, from lower-dose clot-busting drugs to advanced catheter procedures.

He predicts these trials will triple the number of randomized patients studied and mark a new era for PE treatment.

🔗 Read more: Link in bio.

#StopTheClot #ClinicalTrials #PulmonaryEmbolismTreatment #CHEST2025

Blood clotting disorders, also called thrombophili

Blood clotting disorders, also called thrombophilias, can run in families—and knowing when and how to get tested isn’t always simple, especially if you’re already on blood thinners.

Our November PEP Talk will help you understand what thrombophilia testing involves, why it matters, and how to approach these conversations with your healthcare provider. We’ll also explore how to talk with family members who may share inherited clotting risks.

🩸At the link in bio, check out our helpful resource on shared decision making for blood clotting disorder testing.

🔗Join us Tuesday, Nov. 11 at 7 p.m. ET for this important discussion. Register: Link in bio!

(If you can’t attend the live event, register anyway to get the recording sent to your inbox.)

#StopTheClot #ThrombophiliaTesting #BloodClottingDisorders

❤️ We see you — and others are, too. At the

❤️ We see you — and others are, too.

At the CHEST conference this week, we were moved by Merck’s powerful “Red Chair” exhibit — a reminder that patients belong at the center of every conversation.

Their message says it all:
“Empowering the patient community. When you’re sitting in this red chair, ask yourself — how can I prioritize patient health? How can I empower patients to engage in shared decision-making?”

At NBCA, that’s exactly why we’re here — to make sure your voices are heard, your experiences are represented, and your stories are shaping change.

Your participation in NBCA surveys, patient stories, support groups, and programs helps industry and clinicians better understand what patients really need.

Change is happening — and you’re part of it. 🫶

#CHEST2025 #StopTheClot #PatientVoice #SharedDecisionMaking @merck

Elite athletes aren’t immune to blood clots. Fro

Elite athletes aren’t immune to blood clots. From NBA stars Damian Lillard and Chris Bosh to tennis legend Serena Williams, clots have sidelined players across every sport.

Paralympic wheelchair racing champion @TatyanaMcFaddenUSA was diagnosed with a clot in 2017 and made a remarkable comeback — returning to racing, winning medals, and advocating for blood clot awareness through the National Blood Clot Alliance.

Their stories are a reminder that anyone, even top performers in peak condition, can be at risk. 🔗 Read the piece: Link in bio!

Tatyana McFadden told her story on our podcast. 🔗Listen at the link in bio.

#StopTheClot #AthletesAndBloodClots

🫁 Every breath matters — and NBCA Health Equi

🫁 Every breath matters — and NBCA Health Equity Coordinator, Karen Adams, knows this firsthand. This striking lung art installation at #CHEST2025 provided the perfect backdrop for her journey as a pulmonary embolism survivor and advocate.

After surviving bilateral PEs linked to cancer, Karen now uses her experience to help clinicians and patients recognize symptoms earlier and act sooner. Karen's representing NBCA at #CHEST2025 medical conference this week to share how education, awareness, and collaboration can save lives.

#EveryBreathMatters #StopTheClot #PulmonaryEmbolism #LungHealth #CancerAwareness

New research shows that delays in diagnosing blood

New research shows that delays in diagnosing blood clots dramatically increase the risk of death. Nearly 80% of patients in the study waited more than 24 hours for a confirmed diagnosis, and those delays tripled mortality in some hospitals.

Blood clots often start with vague symptoms like shortness of breath, chest pain, or leg swelling. Early recognition saves lives. Trust your instincts. If something feels wrong, speak up, and advocate for urgent evaluation.

👉 Read the article: Link in bio.

#StopTheClot #BloodClots #DelayedDiagnosis #BloodClotDiagnosis

🌍 News Release: NBCA Expands Global Medical Lea

🌍 News Release: NBCA Expands Global Medical Leadership

The National Blood Clot Alliance (NBCA) is proud to announce the appointment of Dr. Erik Klok, world-renowned thrombosis expert from Leiden University Medical Center (Netherlands), as the first European member of NBCA’s Medical & Scientific Advisory Board (MASAB).

This historic milestone reflects NBCA’s growing commitment to address venous thromboembolism (VTE) as a global health crisis—advancing education, advocacy, and patient support far beyond U.S. borders.

“VTE knows no borders,” said Dr. Klok. “Around the world, patients are experiencing unacceptable gaps in care. I’m honored to join NBCA’s MASAB and help bring critical awareness and resources to global communities.”

With leadership from Dr. Klok, MASAB Chair Dr. Alok Khorana (Cleveland Clinic), and NBCA President Leslie Lake, NBCA is broadening its reach to save lives worldwide through collaboration, innovation, and patient-centered care.

#StopTheClot #VTEAwareness #GlobalHealth #Thrombosis #MedicalLeadership #PatientAdvocacy #MASAB

Thrombophilia testing can provide important clues

Thrombophilia testing can provide important clues about why a blood clot occurred and how to lower future risk. But deciding if and when to test—especially while on an anticoagulant—can be complicated.

Our next PEP Talk on Tuesday, Nov. 11 at 7 p.m. ET demystifies the process so you can make informed choices with your care team.

We’ll discuss:

✅ What thrombophilia testing is and the common conditions it looks for
✅ Who might benefit from testing and who may not
✅ How blood thinners and timing can affect certain test results
✅ What results can mean for treatment duration, family testing, pregnancy care, and procedures
✅ Questions to ask your clinician to decide on next steps

Join us to understand the purpose of testing and how it fits into your overall care plan. Register: Link in bio.

#StopTheClot #BloodClots #VTE #PEPTalk #ThrombophiliaTesting

🚨 PEP Talk Update 🚨 Tonight’s PEP Talk on

🚨 PEP Talk Update 🚨

Tonight’s PEP Talk on Children & Blood Clots has been postponed. We apologize for any inconvenience and appreciate your understanding. We’ll share the new date soon—stay tuned!

In the meantime, learn more about Blood Clots in Children here: https://www.stoptheclot.org/about-clots/blood-clots-in-children-resources/

#PEPTalk #StopTheClot #BloodClots #PediatricBloodClots #PediatricVTE

💔 It started with a fast heartbeat. On a Frida

💔 It started with a fast heartbeat.

On a Friday in February 2021, I noticed my heart rate was racing — even when I wasn’t doing much. By Monday, I had chest pain and could barely catch my breath.

By Tuesday, something in me said go to the hospital. After nearly passing out several times in the ER, I learned the truth:
➡️ I had bilateral pulmonary emboli — blood clots in both lungs. I was scared, confused, and alone.

The doctors told me my birth control pills were likely to blame. I was admitted immediately and started on blood thinners. Later, I saw a hematologist and found out I also have Factor II gene mutation, which—combined with the pills—triggered the clots.

Since then, I’ve lived with constant anxiety — blood clots are something I’ll have to think about for the rest of my life: before travel, surgeries, even pregnancy. It can be overwhelming at times, but I’m grateful every day that I trusted my instincts and listened to my body when something felt off. I know this could have ended up much worse.

🩸 Blood clots can happen to anyone. Always trust your instincts!

👉 Read & submit patient stories at the link in bio.

#StopTheClot #StopTheClotStory #BloodClots #PE #HealthAnxiety #BloodClotSurvivor #BirthControl #FactorII #Thrombophilia

The National Blood Clot Alliance will be at the Am

The National Blood Clot Alliance will be at the American College of Chest Physicians Annual Meeting in Chicago next week! We’re excited to connect with this clinical community to discuss the latest in pulmonary embolism prevention, diagnosis, effective treatment, and of course, patient advocacy.

We'll also be sharing patient resources and real-life experiences to help clinicians better understand the challenges we face as patients.

📣 What’s the number one thing you want the clinical community to know about your patient experience? Let us know in the comments!

#StopTheClot #BloodClots #CHEST2025 #VTE

🌍 World Thrombosis Day: Together, We Can End Th

🌍 World Thrombosis Day: Together, We Can End This Global Health Crisis

Today, on #WorldThrombosisDay, we unite with organizations and individuals around the world to shine a light on one of the most urgent — yet often overlooked — health crises: blood clots.

Every year, millions of people are affected by blood clots, but with awareness, education, and collaboration, most of these tragedies can be prevented. Ending this global health crisis takes all of us — patients, healthcare professionals, advocates, and supporters — working together to stop the clot. ❤️🩸

🏃‍♀️ Today is also the final day of NBCA’s Race to Stop the Clot® Fun Run!
To everyone running, walking, or rolling this weekend — thank you for raising awareness and funds to save lives. Your steps move us closer to a world where fewer families are affected by blood clots.

📸 Share your photos and tag @StopTheClot and #RaceToStopTheClot to show how you’re part of this movement.

👉 Haven't signed up yet? It's not too late! bit.ly/NBCAFunRun2025 *Link in bio*

Together, we can #StopTheClot and make blood clots history. 🌎💪 @worldthrombosisday

📅 HAPPENING TOMORROW: Our next PEP Talk on Tues

📅 HAPPENING TOMORROW: Our next PEP Talk on Tuesday, Oct. 14 at 7 p.m. ET will focus on pediatric blood clots — why they happen, how they’re diagnosed, and what treatment and recovery can look like.

When a child develops a blood clot, it can be frightening and confusing for parents and caregivers. Our medical expert, Neil Goldenberg, MD, Ph.D, pediatric hematologist from Johns Hopkins All Childrens Hospital, will answer your questions.

🔗 Register: Link in bio.

📨 (If you can’t attend the live event, register anyway to receive the recording in your inbox!)

#StopTheClot #BloodClots #PEPTalk #PediatricVTE

🤓 If you want to educate yourself on pediatric

🤓 If you want to educate yourself on pediatric blood clots in advance of our PEP Talk next week, we’ve got you covered!

Explore our resource on blood clots in children, created by Neil Goldenberg, MD, Ph.D, a pediatric hematologist at Johns Hopkins All Children’s Hospital and a leading expert and researcher on blood clots and children. 👉Get it at the link in bio!

Dr. Goldenberg joins us for our next PEP Talk on Tuesday, Oct. 14 at 7 p.m. ET. We hope to see you there! 🔗 Register: Link in bio.

📨 (If you can’t attend the live event, register anyway to get the recording sent to your inbox.)

#StopTheClot #BloodClots #PEPTalk #PediatricVTE

It's GO TIME! The Weekend Race Starts Today! Look

It's GO TIME! The Weekend Race Starts Today!

Looking for a way to get involved and recognize World Thrombosis Day? Join NBCA’s 6th Annual Race to Stop the Clot® Fun Run — happening now through October 13.

🏃‍♀️ Pick your distance: 1 mile, 5K, or 10K
🌍 Participate anywhere, anytime
💲 $35 registration — 100% tax-deductible
🎁 Raise $50+ → earn a custom race shirt
💙 Donate $100+ → your registration is free!

Every step brings awareness to blood clots and helps save lives through education and advocacy.

👉 Sign up today and make your miles matter: https://runsignup.com/Race/PA/Philadelphia/RaceToStopTheClotFunRun
🔗Link in bio
#RaceToStopTheClot #StopTheClot #WorldThrombosisDay #FunRun #BloodClotAwareness #TeamStopTheClot

Jamie’s charley horse and pressure in her chest

Jamie’s charley horse and pressure in her chest were dismissed, leaving her feel unheard and uneasy. As her symptoms worsened, she almost didn’t get checked out because of her previous experience, but that decision to go to the ER saved her life.

Jamie feels fortunate that a friend shared Stop the Clot resources with her, including PEP Talk, and all that she learned. How did you find your way to the National Blood Clot Alliance (stoptheclot.org)? Tell us in the comments!

👉 Read other patient stories and submit your own: Link in bio.

#StopTheClot #BloodClots #DVT #PE #BloodClotAwareness

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