New York State Bleeding Disorders Coalition

Advocating for people with bleeding disorders in New York state!

[New York State Bleeding Disorders Coalition @nysbdorg]

Wishing @SenJoeAddabbo a very Happy Birthday!! Thank you for all you do!

[New York State Bleeding Disorders Coalition @nysbdorg]

We were happy to meet with @SenGriffo in the Capitol today to raise awareness about the bleeding disorders community and to ask him to support #S965--a bipartisan bill to protect kids with chronic conditions who need access to medically-necessary care.

[New York State Bleeding Disorders Coalition @nysbdorg]

We had a great meeting today with @PatriciaFahy46's office! We hope to have you join our efforts to pass #S965, Senator.

This bill would ensure children with specific diagnoses can access the medically-necessary care and providers they need.

[New York State Bleeding Disorders Coalition @nysbdorg]

We just finished meeting with Emma in Assemblymember González-Rojas's office.

@votejgr: Please support budget language to reform prior authorization, extend the continuity of care from 60 to 90 days, and increase transparency in denials.

Info: https://t.co/Ly7yFZocye

[New York State Bleeding Disorders Coalition @nysbdorg]

Had a great meeting with @SenatorHarckham's office this afternoon!

We hope the Senator fights to protect language in the budget that would reform prior authorization, extend the continuity of care, and increase transparency in denials.

More info: https://t.co/Ly7yFZocye

[New York State Bleeding Disorders Coalition @nysbdorg]

We had the pleasure of meeting with @senatorzellner this afternoon to ask him to support #S965.

If passed, this bill would ensure that children with bleeding disorders and other chronic conditions continue to have access to services that are deemed medically-necessary for them.

[New York State Bleeding Disorders Coalition @nysbdorg]

Assemblyman @steck_phil is a champion for patients with bleeding disorders!

Thank you for cosponsoring #A2384A to ensure kids have access to the care they need, and #A3789A reforming prior-authorization.

Thank you Dylan, with the Assemblyman's office for meeting with us today.

[New York State Bleeding Disorders Coalition @nysbdorg]

Thank you Assemblyman Bill Conrad for sponsoring a resolution to declare March as Bleeding Disorders Awareness Month in New York.

Thank you for being a champion on behalf of the bleeding disorders community, @140thBill!

[Bill Conrad, 140th NYS Assembly @140thBill]

Bleeding disorders have caused much suffering in our time. But early detection and treatment have infused patients' stories with hope.

This #BleedingDisordersAwarenessMonth, I was proud to again sponsor a resolution in its honor and to welcome to Albany friends from @nysbdorg.

[New York State Bleeding Disorders Coalition @nysbdorg]

Charity just with Senator @MarkWalczyk in Albany.

Thank you, Sen. Walczyk, for cosponsoring #S7297A to reform prior authorization and cut through insurer-imposed administrative barriers that can delay or disrupt patient care.

[New York State Bleeding Disorders Coalition @nysbdorg]

Jess and Matt just met with @AMRomero109's office!

Please support #A2384a to help ensure that kids with chonic conditions, like bleeding disorders, can access the medically-necessary care they need.

[New York State Bleeding Disorders Coalition @nysbdorg]

Thank you, Sen. Jake Ashby, for being a cosponsor of #S965--a bipartisan bill to protect access to medically-necessary care for kids with bleeding disorders and other chronic conditions!

[New York State Bleeding Disorders Coalition @nysbdorg]

Jessica and Caileb just met with Kim in @senfernandez34's office!

Thank you, Sen. Fernandez, for cosponsoring #S965 to ensure that kids with chronic conditions, like bleeding disorders, can access the lifesaving medical care they need.

[New York State Bleeding Disorders Coalition @nysbdorg]

This morning, advocates met with @SenatorRJackson's staff to thank him for cosponsoring S.965.

This bill would require state-regulated health plans to cover medically necessary care for children with certain diagnoses, even when the provider is out of network or out of state.

[New York State Bleeding Disorders Coalition @nysbdorg]

Advocates from across New York State are in Albany today to ask their elected officials to support policies that protect patients and ensure they continue to have access to the care they need!

[New York State Bleeding Disorders Coalition @nysbdorg]

March is Bleeding Disorders Awareness Month in NY. Join us as we dispel some of the myths about #bleedingdisorders!

[New York State Bleeding Disorders Coalition @nysbdorg]

Our very own Bob Graham was recognized as a Rare Impact Community Champion!

[National Organization for Rare Disorders (NORD) @RareDiseases]

Tonight, we celebrated our 2025 Rare Impact Award Community Champions, including a devoted mother who, like so many in the rare community, became not only a full-time caregiver, but also took on the roles of advocate, researcher, social worker, and nurse.

She found hope in NORD's motto: “Alone we are rare. Together we are strong.” 💙

To all our award winners — thank you for your strength, leadership, and unwavering advocacy. You make our community stronger and inspire us all.

[NYCHemophiliaChapter @NYCHemophilia]

On 4/1, the CDC’s Division of Blood Disorders underwent major cuts. Additional permanent terminations are expected soon.

These experts are critical to research, public health, & data collection for our community.

Email your lawmaker to save this program: https://t.co/iuncSGqqfh

[Robert Smullen @SmullenNewYork]

I met with members of the New York State Bleeding Disorders Coalition (NYSBDC) on this Patient Advocacy Day! The NYSBDC is a nonprofit organization dedicated to raising awareness on bleeding disorders and advocating for patients across New York State.
#NYSBDC #PatientAdvocacyDay

[New York State Bleeding Disorders Coalition @nysbdorg]

Thank you for meeting with us, @SmullenNewYork!

[Robert Smullen @SmullenNewYork]

I met with members of the New York State Bleeding Disorders Coalition (NYSBDC) on this Patient Advocacy Day! The NYSBDC is a nonprofit organization dedicated to raising awareness on bleeding disorders and advocating for patients across New York State.
#NYSBDC #PatientAdvocacyDay

[New York State Bleeding Disorders Coalition @nysbdorg]

@140thBill Thank you so much for your support, @140thBill!