Eastern Pennsylvania Bleeding Disorders Foundation

03/01/2026

What is a bleeding disorder?

March is Bleeding Disorders Awareness Month — a time to increase understanding of conditions that affect the way blood clots.

Most people stop bleeding quickly after an injury.
Someone with a bleeding disorder may bleed longer — sometimes internally and without visible signs.

Bleeding disorders include:
• Hemophilia A & B
• Von Willebrand disease
• Rare factor deficiencies
• Platelet function disorders

With the right treatment, education, and support, people with bleeding disorders can live full, active lives.

That’s where the Eastern Pennsylvania Bleeding Disorders Foundation comes in.

We connect families.
We provide trusted education.
We advocate for access to care.
We offer financial assistance and meaningful community support across our 41-county region.

💙 Learn more at epbdf.org
💙 Follow along this month as we share stories, facts, and ways to support the bleeding disorders community.

02/28/2026

Today is Rare Disease Day.

More than 300 million people worldwide live with a rare disease. Bleeding disorders are part of that number.

Awareness matters.
Access matters.
Advocacy matters.

At EPBDF, we work every day to ensure individuals and families affected by bleeding disorders in our 41-county region have the education, support, and financial assistance they need to thrive.

Today, help us:
💜 Share this post
💜 Start a conversation
💜 Learn about bleeding disorders
💜 Support organizations serving rare communities

Because rare deserves recognition.

Learn more: https://www.rarediseaseday.org/

02/27/2026

🎳 ONE WEEK TO GO! 🎳
Bowling for Bleeding Disorders is just 7 days away — and we’re ready to kick off our first fundraiser of the year in the best way possible: together.

This event is for everyone — families, friends, kids, adults, serious bowlers, and “just here for the fun” bowlers.

💙 Your participation supports EPBDF initiatives that serve individuals and families across our community.

👉 Reserve your spot today so we can plan accordingly.
Not sure yet? No problem — you can still purchase tickets at the door!

Let’s fill the lanes and start the year strong. 🎳
We can’t wait to see you there!

LINK TO REGISTER: https://epbdf.org/events/bowling-bleeding-disorders-2026/

02/26/2026

Mark your calendar for March 28.

We’re going live for an evening of meaningful conversations, community voices, and live music, all centered on the bleeding disorders community. This national NBDF livestream is a space to listen, learn, and feel connected to something bigger.

📅 March 28 | 4–7 PM PST
🔗 Learn more at: https://bit.ly/46wBui2

02/24/2026

🖤 Black History Month Spotlight 🖤

Constance Williams shares a powerful reminder: "bleeding disorders are not limited to one community — they affect people of all nationalities, including the Black community. Representation in the bleeding disorders space matters because it shows our children and grandchildren that they are seen, that they belong, and that their health journeys deserve attention and care."

After spending three and a half weeks in the hospital and receiving an ITP diagnosis, Constance had to advocate fiercely for herself. Her experience reinforced an important truth: a diagnosis does not define who you are. You have the right to ask questions, to be heard, and to find doctors who respect and support you.

This Black History Month, we honor the strength, resilience, and advocacy of Black voices in our community. 💙✊🏾

02/20/2026

Register for the upcoming team captain webinar at https://hemophilia-org.zoom.us/meeting/register/CKIOvha5R-O3T7sZiTKkmw

02/20/2026

Samantha has been a passionate, dedicated Advocacy Ambassador for nearly three years. While participating in our advocacy initiatives, she’s seen firsthand the impact of her hard work – like the importance of protecting the Hemophilia Line Item and ensuring funding to all seven hemophilia treatment centers across Pennsylvania.

Do you want to make lasting changes in the bleeding disorders community? Join community members like Samantha at the Joey Smiles Advocacy Training, taking place May 3-4 in Harrisburg! Learn more and register at: https://wpbdf.org/event/the-joey-smiles-advocacy-ambassador-education-and-training

02/09/2026

Join us for an educational dinner hosted by Pfizer focused on advances in hemophilia care, including discussion around Hympavzi™.

📅 Tuesday, February 11
🕡 6:30 PM
📍 Maggiano’s Little Italy, King of Prussia, PA

This evening will provide an opportunity to learn more about emerging treatment options, ask questions, and connect with others in our community — all in a welcoming, educational setting.

🍽️ Dinner will be provided.
📚 Educational program only.

👉 Registration required.
https://epbdf.org/events/discoverhympavzi/

02/03/2026

📣 Important Date Change! Due to an overcapacity of groups scheduled to be at the Capitol on Tuesday, May 5th, we will be shifting our schedule by one day. Training at the Harrisburg Hilton will take place on Sunday, May 3rd from 3:00PM-8:00 PM. Legislative Meetings will take place at the Capitol on Monday, May 4th.

Register for the Joey Smiles Advocacy Ambassador and Education Training today! Email rsvp@wpbdf.org to receive the registration form.

01/28/2026

Please join us by contacting PA Senators Fetterman and McCormick TODAY!

Earlier this month, the House passed an extension of the expired marketplace tax credits that made Pennie plans more affordable than ever. Now it's the Senate's turn to finish the job, and Open Enrollment ends this week!

Without this extension, nearly 500,000 Pennsylvanians are already facing massive premium increases, with some families paying double, triple, or even quadruple what they were paying for coverage last year.

Will you contact Senators Fetterman and McCormick ASAP to ask them to support an extension of marketplace tax credits? NOW is the time to get this done. Send them an email with one click: https://bleeding.quorum.us/campaign/eAPTC