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Hemophilia B Monthly
Empowering Through Education and Community
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From the CEO – March Reflections
March is a time of renewal. As we begin to shed the winter months and look toward spring, it’s a natural moment to pause, reflect, and plant new seeds for the season ahead. Just as nature awakens, we are reminded that growth often begins with small steps and new intentions. What is one change you would like to nurture this spring?
March is also Bleeding Disorders Awareness Month, a time when we have the opportunity to educate others, share our stories, and shine a light on our community. We are excited to share several new programs in the news that follows and hope you will join us at the Symposium, whether in person or online.
As we plant new seeds this spring, may they grow into greater awareness, stronger connections, and a healthier future for our entire community.
With appreciation,
Kim Phelan
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We are thrilled to invite you to apply to be part of something truly historic: the first-ever Coalition for Hemophilia B Advocacy Education Summit, followed by a Hill Day where your voice will be heard where it matters most. This is a milestone moment for our community, and we want you to be a part of it.
This is not just a training, it is an experience designed to meet you exactly where you are. Whether you have been advocating for years or are just stepping into your power for the first time, this Summit was built for you.
Through this program, you will be guided by some of the best advocacy and coaching experts in the field. Together, we will:
✦ Build your self-confidence because your story is powerful and your presence matters
✦ Discover your superpowers and identify what makes you uniquely effective as an advocate, then fine-tune those strengths
✦ Gain real education and practical tools, from navigating insurance and the healthcare system to understanding how laws are made at the state and federal levels
✦ Walk away empowered with the knowledge, the network, and the confidence to advocate successfully for yourself, your family, and our entire community
Then we take it to Washington. Following the Summit, we will head to Capitol Hill to put everything we have learned into action, meeting with legislators and making sure the Hemophilia B community's voice is heard loud and clear.
We are so excited to have you join us for this groundbreaking experience. This journey is about becoming stronger for ourselves and for each other. Our community is extraordinary, and together, we are unstoppable.
Thank you for taking this step. Thank you for showing up for yourself, for your family, and for the thousands of others in the Hemophilia B community who benefit every time one of us raises our voice. We cannot wait to take this journey together.
With excitement and gratitude,
Kim Phelan
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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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March is Social Worker Appreciation Month 💙
Today, we recognize the individuals who show up every day to support, advocate, and stand in the gap for those who need it most. Social workers are often the quiet force behind stronger families, healthier communities, and brighter futures.
Your work does not go unnoticed. Your impact is real. And your dedication changes lives.
Thank you for all that you do.
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Interested in paid volunteer opportunities? We’d love to connect with you.
We’re inviting individuals who are interested in paid volunteer roles, both in-person and remote, to support our events, programs, and outreach efforts locally and nationwide.
By completing our short interest form, you’ll help us better understand your
✔️ interests
✔️ availability
✔️ skills and strengths
So we can thoughtfully match you with opportunities that are meaningful, appropriate, and respectful of your time.
Thank you for being part of work that makes a real impact, your time and talent matter.
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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
April 14th
May 12th
June 9th
Sign up and let us know you’re coming.
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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.
Dallas, TX - May 16
Baltimore, MD - June 6
Kansas City, MO - June 13
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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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What Comes Next?
Mental Health Rap Session
Zoom with Karen Boyd LMSW and David Rushlow, LMSW
Wednesday, April 1
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What happens when grief becomes evidence — and evidence becomes a national reckoning?
In Part 2 of this powerful two-part series, Dana Kuhn’s story moves from private devastation to public accountability. After losing his wife because Dana unknowingly contracted HIV through contaminated blood products, Dana began uncovering internal documents that suggested warnings about blood safety existed earlier than families were ever told.
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| The Coalition’s Annual Symposium brings together a distinguished faculty, including medical, research, mental health, and policy experts, alongside industry leaders and advocates. It provides attendees with education, mutual support, and a unique opportunity to connect with others on their path toward greater independence and success. Our event fosters a deeper sense of community and empowers individuals as they move forward in their careers and lives. | | | |
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The Coalition’s Annual Symposium brings together a distinguished faculty, including medical, research, mental health, and policy experts, alongside industry leaders and advocates. It provides attendees with education, mutual support, and a unique opportunity to connect with others on their path toward greater independence and success. Our event fosters a deeper sense of community and empowers individuals as they move forward in their careers and lives.
To attend, join us in the B-Hub: connect.hemob.org
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Word of the Month
Pre-Clinical Trials
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These are the laboratory studies that are required before a product under development can be used in humans for clinical studies. These include toxicity and safety studies, some of which are performed in animals. Other studies are required to show that the product has a good chance of working.
They also include stability (shelf-life) studies to show that the product remains potent long enough to be useful. These often involve formulation and packaging studies. Other pre-clinical studies include development of assays to measure the active ingredient and other characteristics of the product.
Finally, they also include at least partial development of the manufacturing process for the product – see Process development.
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Gareth and Daniel are celebrating 10 years of marriage while raising their four children, all of whom are affected by Hemophilia B. After discovering the condition later in life through Gareth’s father, the family has embraced care, connection, and community. With strong support from their workplace and a love for biking, swimming, and hiking, they are grateful to have found the Coalition for Hemophilia B, where their children can grow, connect, and feel supported. Happy Anniversary!
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