Eastern Pennsylvania Bleeding Disorders Foundation

Eastern Pennsylvania Bleeding Disorders Foundation Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Eastern Pennsylvania Bleeding Disorders Foundation, Medical and health, 937 Paoli Pike #1028, West Chester, PA.

The Eastern Pennsylvania Bleeding Disorders Foundation strives to bring together those affected by bleeding disorders in our 41-county coverage area through education, programming, advocacy, and financial assistance.

03/24/2026

🚨 Call On Your Lawmakers! Ask Them to Support the FY 27 Appropriations Dear Colleague Letter!

Federal bleeding disorders programs at agencies within the US Department of Health and Human Services (including HRSA and CDC) support care, research, and public health monitoring for bleeding disorders. We want to ensure that funding continues for these vital programs in the coming year. Please call on your lawmakers to sign a Dear Colleague letter supporting funding for the HRSA and CDC programs in fiscal year 2027. The letter closes tomorrow, March 25th, so your quick action is appreciated!

Send an email with one click at: https://bleeding.quorum.us/campaign/158467/

03/19/2026

Update for the hemophilia B community.

CSL Behring has announced a temporary global stockout of HEMGENIX. The company states the disruption is not related to safety or effectiveness, but to manufacturing complexity and regulatory standards.

Some individuals may experience delays in access.
If you have questions about your care, please contact your hemophilia treatment center or provider.

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

03/19/2026

We’re bringing our entire community together for a night of energy, music, real talk, and powerful moments you won’t want to miss. Come for the music.

Stay for the message.
Leave feeling connected.

đź”— Learn more at: https://bit.ly/46wBui2

03/17/2026

Be part of a Unite for Bleeding Disorders Walk. Join in the Bleeding Disorders Recruitment Campaign in partnership with CVS Specialty Pharmacy to help amplify engagement and impact.

Register today at uniteforbleedingdisorders.org.

Already signed up? Keep sharing your page and invite others to walk alongside you.

Interested in supporting the advocacy efforts of the Pennsylvania Bleeding Disorders Foundations? Looking to learn more ...
03/13/2026

Interested in supporting the advocacy efforts of the Pennsylvania Bleeding Disorders Foundations? Looking to learn more or need a refresher on our current legislative issues? Join us for the Joey Smiles Advocacy Ambassador Education and Training in Harrisburg! Following the training, we will head to the state capitol to meet with legislators to advocate for the needs of the bleeding disorders community.

Register today by emailing rsvp@wpbdf.org or call the Foundation office at 724-741-6160.

03/13/2026

BioMarin has announced it will withdraw the gene therapy ROCTAVIAN from the U.S. market, with availability continuing through the end of May.

ROCTAVIAN marked a major milestone as the first approved gene therapy for adults with severe hemophilia A. While access challenges influenced this decision, the research behind it represents decades of progress.

NBDF remains committed to supporting innovation and access for our community.

Learn more: https://bit.ly/4b3mdIo

03/12/2026

Turn the volume up, we’re bringing the energy.

March 28 is all about conversation, connection, and live music as NBDF goes live for a one-of-a-kind national event. From powerful community stories to expert insights and live performances, this is your night to tune in and feel the impact.

đź”— Learn more at: https://bit.ly/46wBui2

Medical experts agree… bowling with friends creates happiness.Are these experts real? No.But the fun definitely is.Join ...
03/07/2026

Medical experts agree… bowling with friends creates happiness.

Are these experts real? No.
But the fun definitely is.

Join us today from 2–5 PM at Devon Lanes for Bowling for Bleeding Disorders. 🎳

For $25 per person, you’ll enjoy:

🎳 3 hours of unlimited bowling
đź‘ź Shoe rental
🍕 Pizza and water
🎟 Raffles and prizes

It’s a fun afternoon with great people — all supporting the mission of the Eastern Pennsylvania Bleeding Disorders Foundation and the bleeding disorders community across our region.

đź“Ť Devon Lanes, Devon PA
🕑 Today | 2–5 PM

Come bowl a few frames with us!

Advocates from Pennsylvania had a great meeting today with the office of Mary Gay Scanlon during Washington Days 2026.Th...
03/05/2026

Advocates from Pennsylvania had a great meeting today with the office of Mary Gay Scanlon during Washington Days 2026.

Thank you to Leticia, Staff Assistant in Rep. Scanlon’s office, for taking the time to meet with bleeding disorders advocates and hear directly about the priorities impacting families across Pennsylvania.

A key focus of our conversation was the importance of continued federal funding for bleeding disorders programs at HRSA and CDC. These programs help support the nationwide network of Hemophilia Treatment Centers and critical public health research that improves care, treatment, and outcomes for people living with bleeding disorders.

Strong federal investment in these programs ensures patients and families continue to have access to the specialized care they rely on.

We appreciate the opportunity to share the experiences of the bleeding disorders community and look forward to continuing the conversation.





Grateful for the opportunity to meet today with the office of during Washington Days 2026.Thank you to Nirmal Singletar...
03/05/2026

Grateful for the opportunity to meet today with the office of during Washington Days 2026.

Thank you to Nirmal Singletary, Staff Assistant / Legislative Correspondent, for taking the time to meet with bleeding disorders advocates and hear directly about the priorities impacting families across Pennsylvania.

During our conversation, we highlighted several important issues for the bleeding disorders community:

🩸 Supporting federal bleeding disorders programs at HRSA and CDC, which help sustain the nationwide network of Hemophilia Treatment Centers and critical public health research.

💊 The HELP Copays Act (H.R. 6423 / S. 864) to ensure copay assistance counts toward patients’ deductibles and out-of-pocket costs.

đź“Š The FED UP with Bleeding Disorders Act, which would strengthen data collection and improve understanding of bleeding disorders nationwide.

We appreciate Rep. Houlahan’s continued engagement on issues that impact people living with bleeding disorders and look forward to continuing the conversation.





Great meeting today with Representative Brian Fitzpatrick during Washington Days 2026!We’re grateful for Congressman Fit...
03/05/2026

Great meeting today with Representative Brian Fitzpatrick during Washington Days 2026!

We’re grateful for Congressman Fitzpatrick’s continued support of the bleeding disorders community and for being a co-sponsor of the HELP Copays Act (H.R. 6423) — legislation that helps ensure copay assistance counts toward a patient’s deductible and out-of-pocket costs.

Access to treatment is essential for people living with bleeding disorders, and policies like the HELP Copays Act make a real difference for families across Pennsylvania and the country.

We also appreciated the opportunity to discuss the FED UP with Bleeding Disorders Act, which would strengthen data collection and improve understanding of bleeding disorders nationwide.

Thank you, Congressman , for taking the time to meet with advocates and for supporting policies that help our community thrive.





Address

937 Paoli Pike #1028
West Chester, PA
19380

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+16107705215

Website

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