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Hemophilia B Monthly
Empowering Through Education and Community
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From the CEO – February Reflections
February is a remarkable month.
It is a time of awareness and celebration — Rare Disease Day, Black History Month, Heart Health Awareness, and Women and Girls with Bleeding Disorders Awareness Month. It is also a season marked by meaningful cultural moments, including Lunar New Year and Ramadan. And of course, it is the month when we are reminded to share love, kindness, and connection with those around us.
This month we honor the resilience of women and girls living with bleeding disorders. We raise awareness, amplify their voices, and renew our commitment to advancing care and understanding.
In the hemophilia B community, February also carries deeper reflection. This month, we honor the life and legacy of Dr. Malec, whose passing will be profoundly felt. She was more than a physician — she was a steady hand, a compassionate listener, and a fierce advocate for so many individuals and families. Her dedication improved lives, and her absence will be felt across our community.
February reminds us that life holds both celebration and sorrow, awareness and remembrance, progress and reflection. As we continue our work together, may we do so with gratitude for those who paved the way, commitment to those we serve today, and hope for the future we are building.
With appreciation,
Kim Phelan
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In Memory of Dr. Lynn Malec | |
We are deeply saddened by the passing of Dr. Lynn Malec, a devoted physician, researcher, and advocate for the bleeding disorders community.
Her groundbreaking work, compassionate care, and commitment to her patients and trainees leave a lasting legacy.
Our hearts are with her family, colleagues, and all whose lives she touched.
CLICK HERE to support the family.
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Meetings on the Road are educational, supportive, and free for all members who attend. Gas and toll expenses will be reimbursed, and meals will be provided.
Connect with your hemophilia B community! These events will take place all over the country, so find the one closest to you and come along.
This is a family-friendly event, so bring your loved ones and create new memories with your community. Whether you're new or a veteran, this gathering is for you.
Each meeting takes place on a Saturday and features a full day of exciting activities and interactive learning sessions. You'll have the chance to learn from distinguished speakers and share your experiences with other attendees on living with hemophilia B. We also have fun games and special experiences planned to keep us entertained and engaged.
Chicago, IL - March 14
Dallas, TX - May 16
Laurel, MD - June 6
Kansas City, MO - June 13
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February is Women & Girls with Bleeding Disorders Month | |
By Kim Phelan
In February, we recognize Women & Girls with Bleeding Disorders Awareness Month, a time to recognize what the bleeding disorders community has long known: bleeding disorders affect people differently, and women and girls have too often been overlooked, misdiagnosed, or told their symptoms are “normal.”
At The Coalition for Hemophilia B, we believe that understanding differences is how care improves. Women and girls with hemophilia B and other bleeding disorders may experience a wide range of symptoms, including heavy menstrual bleeding, postpartum bleeding, frequent or unexplained bruising, joint pain, fatigue, and internal bleeding. These are serious medical concerns, not inconveniences, and they cannot be ignored.
The reality is that many women and girls live with multiple symptoms at once. When those symptoms are dismissed or minimized, diagnosis is delayed, and care suffers. Listening to lived experience, alongside clinical evidence, is essential to improving outcomes.
The more we learn from research, from clinicians, and from patients themselves, the clearer it becomes that there is no one-size-fits-all approach to care. Progress happens when patients, caregivers, hematologists, hemophilia treatment centers, and advocates work together, asking better questions, sharing knowledge, and pushing for care that reflects the full spectrum of this community.
This month, we join partners across the bleeding disorders community to lift up women and girls, amplify their voices, and continue advocating for informed, patient-centered care.
Because when we listen, learn, and act together, we move closer to care that truly meets people where they are.
All patients are unique.
The more we learn, the more we understand.
#WomenWithBleedingDisorders #HemophiliaB #WeMeetYouWhereYouAre
Visit our Women’s Resource Center to explore tools, education, and support. -> VIEW
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February is Black History Month | Dr. Charles Drew was a physician and scientist whose groundbreaking work transformed modern medicine. He pioneered large-scale blood banking and developed methods for safely collecting, storing, and transporting blood plasma, advances that made lifesaving transfusions possible around the world. |
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February 28th is
Rare Disease Day
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Rare diseases affect millions of people worldwide, yet every journey is unique. At The Coalition for Hemophilia B, we meet people where they are providing education, advocacy, and connection through every stage of life.
On Rare Disease Day, we stand in solidarity with the rare disease community and continue pushing for access to care, research, and meaningful support. Because rare is more than you can imagine, and no one should face it alone.
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Gene Therapy Support Network | |
For men with hemophilia B over 18.
Hosted by Bobby Wiseman
If you are a male with hemophilia B who is currently on gene therapy or thinking about gene therapy, we invite you to join our private group discussion.
You will hear directly from a member of our hemophilia B community who has experience with gene therapy. He will share his story and answer your questions in a safe, supportive setting.
Dinner vouchers will be provided.
Upcoming Dates
March 10th - Partners and care partners invited!
April 14th
May 12th
June 9th
Sign up and let us know you’re coming.
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Gene Path Weekend Retreat | |
Join us for a weekend retreat for me on Gene Therapy and for those considering Gene Therapy, ages 18 and over.
A thousand acres of quiet hills, open sky and natural beauty in Okalahoma’s Osage Hills - the perfect setting for men for men who are on gene therapy or considering it, to reflect, and share their experiences.
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The Coalition for Hemophilia B Presents The 8th Annual BEATS Music Program Where music meets healing. Where community meets possibility.
For eight years, BEATS has been one of our most transformative programs for patients with Hemophilia B. And the research is clear: music reduces anxiety, eases depression, builds confidence, and strengthens connection. But our community already knows that.
BEATS is open to patients ages 13 and over. Whether you have never picked up an instrument or have been playing for years, this program meets you where you are. Instructors support every skill level in a welcoming, judgment-free environment. You do not have to be a musician to belong here. If you’re willing to learn, we are ready to teach you! You just have to show up. Music will do the rest.
Open to patients with Hemophilia B ages 13 and over. Ages 13 to 17 must attend with a parent or guardian.
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Mental Health Rap Session
Zoom with Karen Boyd LMSW and David Rushlow LMSW
Wednesday, February 25
Building Resilience: Holistic tools and Guided Imagery Meditation
With Tina Sacchi
Wednesday, March 4
Discover Inner Peace and Strength Through Tai Chi and Qigong
Livestream with Rick Starks
Wednesday, March 11
Long Term Healthy Food Habits, Mindset, and Sustainability
Livestream with Vanessa Harris
Wednesday, March 18
What Comes Next?
Livestream with Douglas Stringham
Wednesday, March 25
Mental Health Rap Session
Zoom with Karen Boyd LMSW and David Rushlow, LMSW
Wednesday, April 1
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What happens when life-saving treatment becomes life-altering — and the systems meant to protect families move too slowly to prevent harm?
In Part 1 of this powerful two-part series, Dana Kuhn shares the deeply personal story that would shape a lifetime of advocacy. Set against the early years of the AIDS epidemic, this episode traces Dana’s journey from a newly ordained minister and young father with mild hemophilia to a caregiver navigating fear, stigma, and devastating loss.
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Word of the Month
Rebalancing Agent | Rebalancing agents tweak the clotting system to restore the balance so the blood clots when it should and doesn't clot when it shouldn't. |
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Max Feinstein is blending his love of guitar with advocacy by raising funds for The Coalition for Hemophilia B. Make a donation of $20 or more and you will be entered in a raffle to win a Reverend Sensei Jr. Guitar!
Thanks Max!!
CLICK HERE to donate
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