Center for Bleeding and Clotting Disorders (CBCD) | | | |
Welcome to our Quarterly Patient Newsletter! In this edition, we are happy to share updates on upcoming events, highlights from our recent programs, and exciting announcements from the bleeding disorders community and UC San Diego Health.
Haga clic aquí para ver la versión en español!
| | Upcoming Patient Wellness Programs | | | |
Patient Wellness Programs
Center for Bleeding and Clotting Disorders at UC San Diego Health offers engaging, monthly Patient Programs that are well-attended by our patients and caregivers. We invite you to join these fun, free, interactive programs.
Our full calendar of events can be found here.
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World Hemophilia Day
On April 17, 2025, the global bleeding disorders community came together to recognize World Hemophilia Day. This year’s theme was “Access for All: Women and Girls Bleed Too.” Women and girls with bleeding disorders (WGBDs) have continued to be underdiagnosed and underserved. The global community held the power—and the responsibility—to change this. Through recognition, diagnosis, treatment, and care, the quality of life for women and girls improved, strengthening the bleeding disorders community. We invite interested patients and family members to join ongoing efforts supporting equitable access to critical healthcare. Read more here.
In observance of World Hemophilia Day, CBCD hosted a special Aquatics class at the UCSD Natatorium Indoor Pool, and offered free goodie bags to patients in the clinic waiting room. Each bag included menstrual products and information about free programs available to the bleeding disorders community. By promoting awareness, we can break the stigma of women and girls with bleeding disorders, improve education, and foster better health outcomes for all.
| | Aquatics Class Participants | | |
Looking back at: Previous Patient Programs
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Gentle Yoga Class
Evan Marsh, E-RYT, led a Gentle Yoga class on January 26, providing a relaxing and accessible session for participants. Gentle Yoga promotes blood circulation, flexibility, and stress relief, which are all essential benefits for individuals with hemophilia.
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Lunch & Learn: Chicken Chat
CBCD staff Robert MacDonald, LMT, and Melissa Towers, RN, hosted a Lunch and Learn presentation titled "Chicken Chat" on February 20, where they shared the joys of raising a backyard chicken flock and the nutritional benefits of eggs.
| | Robert Macdonald, LMT (left) and Melissa Towers, RN (right) | | | |
For March’s Bleeding Disorders Awareness Month and Blood Clot Awareness Month, CBCD hosted a Patient Wellness Program each week. Participants took part in an educational lymphatic massage class, gentle yoga session, tai chi practice, and nature walk through UC San Diego campus.
CBCD was proud to offer all Patient Wellness Events with free entry and welcomed patients from other HTCs and the bleeding and clotting disorders community to participate.
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Hemophilia Federation of America (HFA) Conference
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CBCD hosted an interactive exhibitor booth at the HFA 2025 Symposium in Coronado, CA to promote the UCSD Musculoskeletal Ultrasound (MKSUS) and Guided Joint Injections Program. Patients and families affected by bleeding disorders had the opportunity to visit the booth for face-to-face interactions with physicians and physical therapists, and to learn more about the services offered at our treatment center.
MSKUS is a rapid, convenient, highly sensitive, and non-invasive imaging method for the diagnosis of cartilage abnormalities and other joint conditions.
| | | | CBCD Announcements: Website Update, Transition Open House, Center of Excellence, Research Updates | | |
Rady-to-UCSD Health Transition Open House
CBCD provides guided transition of care for adolescents with bleeding and clotting disorders into young adulthood in close partnership with the hemophilia/thrombosis program.
Your care teams at Rady Children's Hospital and UC San Diego Health are committed to ensuring your smooth transition to adult care. The Center for Bleeding and Clotting Disorders at UC San Diego Health invites you to tour our clinic, meet our providers and clinical staff, get your questions answered, and enjoy lunch with us.
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Thursday, June 5, 2025, at 11:00 AM - 1:00 PM at Center for Bleeding and Clotting Disorders
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Registration Link here.
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Hereditary Hemorrhagic Telangiectasia (HHT) Center of Excellence Certification Anniversary
February 2025 marks the one-year anniversary since UCSD CBCD was officially appointed as a Hereditary Hemorrhagic Telangiectasia (HHT) Center of Excellence. Our patient population with HHT is growing as we continue to collaborate with other specialists to provide multidisciplinary care and advance HHT research. CBCD’s Dr. Jenny Zhou is a member of the international HHT steering committee and advises on the standardization of terminology, definitions, and outcome criteria for bleeding in HHT.
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New trial for Glanzmann thrombasthenia
A new clinical trial for adult patients with Glanzmann thrombasthenia, a condition affecting 1 in one million individuals, is underway! This study will evaluate the safety and tolerability of HMB-001, a drug being developed as a prophylactic treatment option to prevent and reduce bleeding events in patients with Glanzmann thrombasthenia. HMB-001 is administered subcutaneously as prophylaxis in a weekly to monthly regimen. HMB-001 is expected to promote local thrombin generation and restoration of blood clotting in Glanzmann thrombasthenia. If you’re interested in learning more about this study, contact the research department at 858-657-6434.
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Blood Clot Awareness Month
In March, we recognized the National Blood Clot Alliance’s (NBCA) campaign, “Do your part to stop the clot” for Blood Clot Awareness Month. This campaign reinforces the importance of education and awareness about blood clots. Our center supports the efforts of the NBCA and others to get the word out. To assist with this, we are providing you with the below links to websites from organizations that provide excellent information about blood clots. Please consider taking the time to explore these organizations’ websites to grow your knowledge base.
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National Blood Clot Alliance – An organization focused on building awareness and community among people affected by, or at increased risk for, blood clots.
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Clot Connect - A group at the University of North Carolina that offers information about research on blood clots and clotting disorders.
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North American Thrombosis Forum - An organization that empowers patients with trusted resources about blood health and helps connect interested patients with clinical trials.
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Programs for Active Living and Support (PALS)
Improve your physical, cognitive, and emotional health by joining post-treatment support groups, classes, and clubs offered through the PALS at UCSD Health East Campus Medical Center. If you are interested in participating or enrolling a loved one, call PALS at 619-229-7216, Monday through Friday between 9:00 a.m. and 3:30 p.m.
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Hemophilia Association of San Diego County (HASDC) Events
Family Education Day hosted by HASDC*
In partnership with Rady Children’s Hospital Hemophilia & Thrombosis Treatment Center and Center for Bleeding & Clotting Disorders at UC San Diego Health, the Hemophilia Association of San Diego County invites you to join us for a day of connection and education at Family Education Day at SeaWorld San Diego. You will have the opportunity to connect with friends old and new, network with industry representatives at our Exhibitor Fair, and hear from medical professionals in the community.
- Date: Saturday, May 17, 2025
- Time: 9:00AM – 2:00PM
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Register here.
*Note this is an Education event hosted by HASDC which is separate from the annual Education Day event hosted by CBCD every October. Additional details coming soon!
Women and Tea
Topic: “Women’s Empowerment”
We will explore women's awareness and advocacy, how bleeding disorders uniquely impact women's health, and ways in which women function as caregivers for loved ones with bleeding disorders.
- Date: Saturday, May 10, at 11:00am
- Location: Westgate Hotel San Diego
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Register here.
| | Women and Tea Event at Westgate Hotel San Diego | | | |
Expressive Art Therapy
Join Alessandra Colfi, PhD, RYT-200, ZIN®, for a series of free Expressive Arts events about Metaphors from Nature: Awareness, Self-expression, Wisdom, Nurturing, and Healing. These workshops help patients tell their stories through different types of art. They are designed to assess, support and strengthen resilience and improve quality of life in patients and caregivers. Contact the facilitator at acolfi@health.ucsd.edu or 858-735-5708 for more information.
- These events are held via Zoom conferencing and offered in-person, taking place over a series of eight Fridays from April 4 – May 23, 2025, from 10:30am – 12:30pm PDT at UC San Diego Health Cancer Services, 1200 Garden View Rd., # 101, Encinitas, CA 92024.
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Register here, Zoom Link will be sent after registration
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Virtual Tai Chi
Join Holistic Healthworks’ Dan Halpain, ABT, HHP, for weekly virtual Tai Chi sessions every Wednesday from 12:00 pm to 1:00 pm. Classes are donation-based.
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Zoom link: here, Meeting ID: 990 9089 4398, Passcode: 938790
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Familia de Sangre Conference
The four California bleeding disorders organizations invite you and your family to join us for the 8th Annual Familia de Sangre, a two-day conference on blood disorders with all programming presented in Spanish. The conference will feature educational sessions covering healthcare, education, mental health, and support services as well as networking opportunities. Registration is now OPEN! This is the only all-Spanish language national bleeding disorders conference in the US. Register now!
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