Mary Gooley Hemophilia Center

02/25/2026

Your lived experience can change the future!

See the picture below for some more detailed information on Community Voices in Research through NBDF. Click the link to join!

https://nhf-cvr.ihp.iqvia.com/

02/18/2026

Save the date (3/28) for a national NBDF livestream!!

On March 28, join us live for a national NBDF livestream featuring real stories, expert voices, chapter highlights, and live music, all in one shared space.

This event brings together lived experience, advocacy, and connection to remind our community: you’re not alone, and your voice matters.

📅 March 28 | 4- 7 PM PT
🔗 Learn more at: https://bit.ly/4rEUiUs

01/16/2026

We would love to see our patient's who are between 6-16 enjoy the adventure at Double H Ranch! Please reach out if you have interest or any questions!!

https://www.doublehranch.org/programs/summer-camp/

12/31/2025

We wish you all a happy and healthy new year ahead!

12/24/2025

From all of us at the Mary Gooley Hemophilia Center - HAPPY HOLIDAYS! 🎄❄️

12/22/2025

12/01/2025

In case you didn't know, our HTC participates with the American Thrombosis and Hemostasis Network (ATHN). This resource is the largest dataset for bleeding disorders in the United States! When you sign up to be part of the ATHNdataset, your de-identified information is able to be compiled with thousands of others to answer scientific, public health and policy questions. This data can help transform care and improve the lives of our patients, including YOU!

One step you can take is to download the Robust Health app and connect yourself to ATHN. You are able to input your events, procedures and treatments. This helps keep us connected and you accountable for your treatment!

Please reach out to Carey (Nurse/Data Coordinator) @ 585-922-5700 if you have any questions regarding this process!

11/24/2025

A reminder that we will be closed on Thursday and Friday this week due to the holiday!

If you are in need of a Hematologist after hours or when we are closed for the holiday, please call 585-399-1717.

11/04/2025

We hope that you join us for our annual holiday event!! See the flyer for more details. If you have questions or wish to RSVP - call the Center at (585) 922-5700.

10/31/2025

We understand that the current government shutdown may cause uncertainty or disruptions in essential benefits, such as SNAP (Supplemental Nutrition Assistance Program). We know that when resources shift, it can create difficult choices for individuals and families — sometimes affecting other important needs.
If you are feeling the impact of these changes or anticipate challenges in the coming weeks, please reach out to the Center’s Social Work team. We are here to help you explore available community resources, navigate benefit concerns, and identify supports that can help during this time.

You can contact us by calling 585-922-5700 or emailing Julie.dorey1@rochesterregional.org. All conversations are confidential.

We know these situations can be stressful, and you are not alone. Please don’t hesitate to reach out — we’re here to support you.
Warm regards,
Mary M. Gooley Hemophilia Center

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RESOURCES:
Mary M. Gooley Hemophilia Center
Social Worker: Julie Dorey
Main number: (585) 922-5700
Cell: (585) 559-0794- for immediate needs call the main number

November SNAP Benefits Information:
https://otda.ny.gov/snap-benefits-shutdown.asp

Food, Clothing and More:
https://www.211lifeline.org/
Find Food | Food Boxes | Food Bank in Rochester, NY | Foodlink
https://roccitylibrary.org/wp-content/uploads/MONROE-COUNTY-AREA-FOOD-CUPBOARDS.pdf
https://roccitylibrary.org/wp-content/uploads/MONROE-COUNTY-AREA-FOOD-CUPBOARDS-SPANISH.pdf
https://www.findhelp.org/
Holiday Assistance:
https://roccitylibrary.org/wp-content/uploads/Holiday-Information-Bulletin.pdf
https://roccitylibrary.org/wp-content/uploads/Holiday-Information-Bulletin-Spanish-Version.pdf

10/28/2025

The Center is now on INSTAGRAM! Follow us for up to date information and announcements.

https://www.instagram.com/mmg.hemophilia.center?igsh=Z3lqOW1kZDF5aHI2&utm_source=qr

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The Mary M. Gooley Hemophilia Center is an independent, federally designated Hemophilia Treatment Center (HTC) based in Rochester, New York (serving people in the surrounding 12 county region) that cares for people affected by hemophilia, von Willebrand disease, rare inheritable bleeding disorders, hemochromatosis and Gaucher’s Disease. The Center is a 501(c)(3) non-profit corporation and a New York State Article 28 Diagnostic & Treatment Center. Our origins date to the late 1940s, when Rochester-area families affected by bleeding disorders came together to improve their lives and the lives of their children. In 1953 the group was chartered as a Chapter of the National Hemophilia Foundation (now known as the National Bleeding Disorders Foundation). The Center remains an NBDF chapter today. Behind Mary Gooley’s energy and leadership, the Chapter opened a Treatment Center in 1959 – one of the first independent treatment centers for hemophilia in the country.

10/27/2025

We want to hear from YOU!

Please take a moment to complete this short survey and let the Mary Gooley Center know what matters most to you. Use the link or scan the QR code to get started.

Thank you for your input!