Eastern Pennsylvania Bleeding Disorders Foundation

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

01/19/2026

Martin Luther King Jr. Day is a reminder that progress happens when we commit to one another. Today, we reaffirm our dedication to advocacy, education, and support for the bleeding disorders community—today and every day.

01/13/2026

01/13/2026

Big news for New Jersey patients and families.
Bill A5217 / S3818 has been signed into law by Phil Murphy, banning copay accumulator programs and ensuring manufacturer assistance counts toward patients’ out-of-pocket costs.

Thank you to Nick Scutari, Lou Greenwald, and advocates statewide for advancing access to care.

🔗 Read more: https://bit.ly/3N6OyUH

01/09/2026

Please join us in welcoming Patricia “Tricia” Mangino to the EPBDF Board! We’re so grateful for the experience, heart, and perspective she brings to our community.

Patricia (Tricia) is a Registered Nurse with nearly a decade of clinical experience and holds a Master’s degree in Nursing. She has worked across a range of specialties, including step-down care, cardiology, and pediatrics, and currently serves in an intensive care unit. In addition to her clinical work, Tricia teaches clinical rotations for college-level nursing students, supporting the education and development of future nurses.

Diagnosed with hemophilia at the age of seven—despite no known family history—Tricia brings a deeply personal perspective to her role on the Board and a strong commitment to advocacy, education, and patient-centered care within the bleeding disorders community.

An avid golfer, Tricia was introduced to the sport through a YWCA Girls Golf program, which provided a safe and empowering athletic outlet. She went on to play competitively for Easton Area High School and Saint Francis University, fostering a lifelong passion for the game.

Tricia lives with her spouse, newborn daughter, and dog. In her free time, she enjoys traveling, golfing, and spending time with her family. Each year, they travel to Hilton Head—her favorite week of the year—where she enjoys combining all of these passions.

We’re grateful to have Tricia’s voice, experience, and advocacy on our Board.

Our complete list of Board Members can be found here on our website: https://epbdf.org/about/board/

01/05/2026

Representatives Kean (R-NJ), Barragán (D-CA), Miller-Meeks (R-IA), Auchincloss (D-MA), Fitzpatrick (R-PA), and Watson-Coleman (D-NJ) reintroduced the Help Ensure Lower Patient (HELP) Copays Act to make necessary and life-saving prescription medications more affordable for patients with rare and chronic conditions such as hemophilia, von Willebrand disease and other rare bleeding disorders.

Read more: https://bit.ly/4s5mDUT

12/15/2025

What a wonderful way to wrap up the year!
Our Holiday Party brought together families, smiles, and a very special guest—Santa himself! 🎅✨

We are so grateful to our generous sponsors and dedicated volunteers who helped make this joyful celebration possible. Your support continues to strengthen and uplift our community. ❤️

From our EPBDF family to yours, we wish you a holiday season filled with warmth, connection, and hope.
Happy Holidays! 🎄

12/11/2025

Advocacy Alert! 🚨 Open Enrollment for Pennie plans is underway, and Congress still hasn't extended the tax credits that made marketplace insurance more affordable than ever.

Senators are expected to vote tomorrow on a healthcare plan that does not include an extension of these tax credits. Instead, they will vote on a proposal to make contributions to health savings accounts that won't make up for the increase in premiums, won't cover most people's deductibles, and isn't likely to have the votes to pass.

Reminder: if Congress doesn't act soon, Pennsylvanians will pay 102% more on average for their Pennie plans starting in just a few weeks.

Tell Congress you want them to extend tax credits that keep Pennie plans affordable ASAP! Click below to send a message to your legislators in Congress: https://pahealth.salsalabs.org/extendacasubsidies/index.html

12/03/2025

On Tuesday, December 2nd, the Western PA Bleeding Disorders Foundation and Eastern Pennsylvania Bleeding Disorders Foundation came together with representatives from all 7 Hemophilia Treatment Centers in Pennsylvania for a statewide Stakeholder Meeting at the Hilton Harrisburg. We were also joined by Matt Delaney of the National Bleeding Disorders Foundation, Karen Bowe of the Hemophilia Alliance, and Kerry Lange from Milliron Goodman.

When we plan, learn, and share knowledge together, we can accomplish so much more. By collaborating on advocacy, community programs, and resources, we’re finding new ways to better support the bleeding disorders community across Pennsylvania. Meetings like this highlight the power of teamwork and the meaningful difference we can make together. Thank you to everyone who participated and continues to strengthen support, education, and outreach for our community.

12/03/2025

🎉 2026 Gettin’ in the Game Junior National Championship!
📅 May 1–3, 2026
📍 Henderson, Nevada

We’re excited to share that CSL Behring will host the 23rd annual JNC—the only national competition designed exclusively for children and teens with bleeding disorders.

Kids ages 7–18 can apply to represent EPBDF and choose their sport: baseball, basketball, golf, or swimming.

This unforgettable weekend includes:
🏅 Skills training
🤝 Friendly competition
🌟 Meeting peers from across the country
📚 Fitness & wellness education

🗓 Deadline: Friday, December 5, 2025

👉 Follow link to be considered:
https://docs.google.com/forms/d/e/1FAIpQLSdJM5sm2V2ABW6R1-WryK7fP8wYQZFOT6LKx-wFKV4fNqN0ZA/viewform