Eastern Pennsylvania Bleeding Disorders Foundation

07/24/2025

Congress has Passed H.R. 1, the One Big Beautiful Bill for America—Now What? Join the Hemophilia Federation of America on Wednesday, August 6, from 6:00 pm - 7:00 pm, for a virtual call to talk about how this bill impacts your healthcare.

🩸 Bleeding Disorders National Community Organizing Call
📅 Wednesday, August 6, 2025
🕕 6:00–7:00 PM ET
🖥️ Virtual

On this call, the Hemophilia Federation of America will cover:
- Will I still qualify for the coverage I have now?
- What changes are coming to Medicaid, the Marketplace, and employer plans?
- Are there new work requirements or reporting rules?
- When do changes go into effect?
- What can I do about it?

Learn more and register at: https://www.hemophiliafed.org/events/bleeding-disorders-national-community-organizing-call/

07/23/2025

Congress has Passed H.R. 1, the One Big Beautiful Bill for America—Now What?

Let’s talk about how this bill impacts your healthcare.

Bleeding Disorders National Community Organizing Call
Wednesday, August 6, 2025
6:00–7:00 PM ET
Meeting Link:https://hubs.li/Q03yhqjq0

This is a hard moment. But we’ve faced hard moments before.
We are a community that knows how to fight—and how to support each other.

We’re not giving up.
And we hope you won’t either.

With thanks and determination,
Your HFA Policy & Advocacy Team

07/17/2025

💙 Thank You, BDRN! 💙

We’re incredibly grateful to BDRN for supporting our Special Campaign to help families and individuals living with bleeding disorders.

Their generosity brings us closer to our goal — and with every donation matched dollar-for-dollar, the impact is doubled!

You can join BDRN in making a difference. Together, we can provide relief when it’s needed most.

👉 Donate today: https://givebutter.com/9WHbqn

07/09/2025

🛑 July 9 is International Emergency Kit Day!

Are you prepared if disaster strikes? An emergency kit—also called a go bag—can make all the difference when you need to act fast.

For those with bleeding disorders, being ready takes extra care. Use today as a reminder to build or check your kit so you’re ready when it counts.

📘 Download our Bleeding Disorders Emergency Preparedness Guide:
🔗 English: https://hubs.li/Q03w24VP0
🔗 Spanish: https://hubs.li/Q03w24mh0

07/09/2025

The FDA has approved the ConcizuTrace™ ELISA Companion Diagnostic test to measure concizumab-mtci levels in hemophilia A and B patients.

Concizumab-mtci (Alhemo®), approved in December 2024, is a subcutaneous therapy that targets tissue factor pathway inhibitor (TFPI) to prevent bleeding episodes in patients 12+ with factor VIII or IX inhibitors.

The ELISA test, developed by Randox Laboratories with Novo Nordisk, quantifies concizumab-mtci in plasma samples after four weeks of treatment to help optimize dosing.

🔗 Learn more about this advancement: https://bit.ly/4k9UrLp

07/04/2025

🇺🇸✨ Happy Fourth of July!

Today, as we celebrate freedom and independence, we’re reminded of the strength within our bleeding disorders community. 🩸💪

Every day, your support helps individuals and families find freedom from financial worry, access life-saving treatments, and live more independently.

❤️🤍💙 This Fourth of July, consider giving the gift of peace of mind by supporting our Special Campaign. Your donation will directly help community members in need.

👉 Donate today and make independence possible for all.

🔗 https://givebutter.com/9WHbqn?blm_aid=0

07/03/2025

Please take a moment to read the statement from NBDF CEO Phil Gattone regarding House of Representatives Bill #1 (HR 1), which was passed today. President Trump is expected to sign it into law tomorrow. Moving forward, additional education and advocacy efforts will be needed at the state level here in Pennsylvania.

Community Update: Congress has passed the "One Big Beautiful Bill Act", which will negatively impact health insurance for many in the bleeding disorders community.

NBDF has been working alongside partners and advocates to oppose harmful provisions and will keep fighting at the federal and state levels as this law is implemented.

We know these changes may feel overwhelming. Please know NBDF will continue to stand with you, advocate for you, and share resources to help you maintain your coverage.

🔗 Read the full statement to learn more: https://bit.ly/44wvTGE

07/03/2025

We’re excited to announce our Special Campaign to provide direct financial assistance to families living with bleeding disorders.

Thanks to a generous anonymous donor, every donation will be matched, dollar for dollar, up to $10,000.

That means your gift goes twice as far to help ease the burden of treatment, travel, and daily costs.

💙 Please consider making a donation today.
Together, we can reach our goal and provide even more relief and hope to our community.

Follow the link to make a donation: https://givebutter.com/9WHbqn?blm_aid=0

07/02/2025

Urgent: We need to act NOW to stop the so-called “One Big Beautiful Bill” from becoming law.

Call or email your Representative and urge them to vote NO on H.R. 1.
Lives depend on it.

Take action: https://bit.ly/3TlhoQL

06/30/2025

UPDATE: 1:50 pm June 30: The voicemail for Senator McCormick's DC office is full. Please call their district offices. Let us know if you have any issues contacting the Senate offices.

Office numbers for Senator McCormick
Philly 215-405-9660 Pittsburgh 412-803-7370 Allentown 610-782-9470
Erie 814-240-5213 Harrisburg 717-231-7540

Office numbers for Senator Fetterman
Philly 215-241-1090 Pittsburgh 412-803-3501 Harrisburgh 717-782-3951 Erie 814-453-3010

Urgent: Action Needed on Medicaid Expansion Amendment

Please call your Senators TODAY! Phone numbers and the "ask" are below!

The bill itself will be devastating to Pennsylvania. There is one amendment being voted on today that would drastically cut federal funds for Medicaid Expansion. This amendment is particularly dangerous for Pennsylvania as it would effectively end Medicaid Expansion and take away health coverage from 700,000 people in Pennsylvania who are covered by Medicaid. We need you to reach out to Senator McCormick (202-224-6324) and Senator Fetterman (202-224-4254), as well as activate your networks if possible, and ask them to vote NO on any amendment that would make major cuts to Medicaid Expansion or reduce the FMAP (federal contribution to Medicaid).

06/19/2025

Right now, US Senators are debating a bill that would make deep cuts and harmful policy changes to Medicaid and to Marketplace insurance. This legislation (the so-called “One Big Beautiful Bill”) has already passed the House, but it can’t become law without Senate approval. We need to raise our voices to stop the bill in the Senate!

The stakes could not be higher. More than one-third of people in the bleeding disorders community get health insurance via either Medicaid or the Marketplace – insurance that covers essential treatment and medicines. The bill, now under consideration in the Senate, threatens access to coverage and care for us, and for up to 16 million other people from across all walks of life.

Click the link below to send a message to your Members of Congress!

🔗 https://bleeding.quorum.us/campaign/127941/

Thank you for defending the programs that provide essential health insurance for so many in our bleeding disorders community!