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December 06, 2022

Haystack Responds to CMS’ National Provider Directory RFI→

December 06, 2022/ Michelle Osburn

Read more.

December 06, 2022/ Michelle Osburn/ /Source
Comment Letters
advocacy, medicare, news, other issues

Michelle Osburn

November 30, 2022

Haystack response to 2022 National Strategy to Support Family Caregivers→

November 30, 2022/ Michelle Osburn

Read more.

November 30, 2022/ Michelle Osburn/ /Source
Comment Letters
other issues, news

Michelle Osburn

November 18, 2022

Haystack's Comments to Congressional Leadership on HEART Act Provisions→

November 18, 2022/ Michelle Osburn

Read more.

November 18, 2022/ Michelle Osburn/ /Source
Comment Letters
news, HEART Act

Michelle Osburn

November 07, 2022

Haystack's comments to CMS on Streamlining Renewal Processes→

November 07, 2022/ Michelle Osburn

Read more.

November 07, 2022/ Michelle Osburn/ /Source
Comment Letters
medicaid, cms

Michelle Osburn

September 28, 2022

Haystack Comments to AHRQ on CED Recommendations Protecting Patients→

September 28, 2022/ Michelle Osburn

Read more.

September 28, 2022/ Michelle Osburn/ /Source
Comment Letters
rare, cancer, Comments to AHRQ

Michelle Osburn

September 13, 2022

Haystack signs on to Telehealth Stakeholder Letter to Senate→

September 13, 2022/ Michelle Osburn

Read more.

September 13, 2022/ Michelle Osburn/ /Source
Comment Letters
telehealth, Medicare

Michelle Osburn

September 06, 2022

Haystack Project highlights the need for well-meaning proposals to consider impact on rare patients. →

September 06, 2022/ Michelle Osburn

Read more.

September 06, 2022/ Michelle Osburn/ /Source
Comment Letters
medicaid, medicare, IRA

Michelle Osburn

August 01, 2022

Haystack Responds to HHS RFI on Improving Primary Care

August 01, 2022/ Michelle Osburn

Read more.

August 01, 2022/ Michelle Osburn/ /Source
Comment Letters, Letters
miscellaneous, Medicare, Medicaid

Michelle Osburn

May 20, 2022

Comments on Senate HELP Committee May 2022 Draft UFA Package→

May 20, 2022/ Michelle Osburn

Read more.

May 20, 2022/ Michelle Osburn/ /Source
Letters, Comment Letters
HELP, HEART Act

Michelle Osburn

February 10, 2022

Haystack Project's sign-on letter commenting to CMS' proposed NCA for monoclonal antibodies→

February 10, 2022/ Michelle Osburn

Read more.

February 10, 2022/ Michelle Osburn/ /Source
Letters, Comment Letters, Position Statements
news, medicare, medicaid, other issues

Michelle Osburn

January 27, 2022

Haystack Project's comment letter on the HHS Notice of Benefit and Payment Parameters for 2023 of the Patient Protection and Affordable Care Act→

January 27, 2022/ Michelle Osburn

Read more.

January 27, 2022/ Michelle Osburn/ /Source
Comment Letters, Letters
ACA, NPBB, comment letter, other issues

Michelle Osburn

December 10, 2021

Haystack's SDOH caucus letter, dated 12-10-2021→

December 10, 2021/ Michelle Osburn

Read more

December 10, 2021/ Michelle Osburn/ /Source
Comment Letters, Letters
other issues, heat

Michelle Osburn

October 20, 2021

Guidance on Coordinating Care Provided By Out-of-State Providers for Children with Medically Complex Conditions→

October 20, 2021/ Michelle Osburn

Read more

October 20, 2021/ Michelle Osburn/ /Source
Comment Letters, Letters
medicaid, medicare

Michelle Osburn

October 04, 2021

Reasonable & Necessary →

October 04, 2021/ Guest User

Read more.

October 04, 2021/ Guest User/ /Source
Comment Letters, Letters
medicare

Guest User

September 09, 2021

Medicare Part D Out of Pocket Letter→

September 09, 2021/ Rebecca Balliet

Read more.

September 09, 2021/ Rebecca Balliet/ /Source
Comment Letters, Letters
medicare

Rebecca Balliet

August 10, 2021

Tuberous Sclerosis Alliance opposes MACPAC recommendations regarding differential Medicaid rebates for FDA accelerated approval drugs→

August 10, 2021/ Rebecca Balliet

Read more.

August 10, 2021/ Rebecca Balliet/ /Source
Comment Letters, Letters
medicaid, Medicaid, FDA

Rebecca Balliet

August 10, 2021

Hospital Inpatient Prospective Payment Systems for Acute Care - APF IPPS Letter→

August 10, 2021/ Rebecca Balliet

Read more.

August 10, 2021/ Rebecca Balliet/ /Source
Letters, Comment Letters
medicare

Rebecca Balliet

August 10, 2021

Hospital Inpatient Prospective Payment Systems for Acute Care→

August 10, 2021/ Rebecca Balliet

Read more.

August 10, 2021/ Rebecca Balliet/ /Source
Comment Letters, Letters
medicare

Rebecca Balliet

July 19, 2021

CURES 2.0 Letter

July 19, 2021/ Rebecca Balliet

Read more.

July 19, 2021/ Rebecca Balliet/ /Source
Letters, Comment Letters
other issues, Haystack

Rebecca Balliet

July 17, 2021

Support House Passage- HEART Act 5.06.21 (Senate) (1)→

July 17, 2021/ Rebecca Balliet

Read more.

July 17, 2021/ Rebecca Balliet/ /Source
Comment Letters, Letters
medicaid, Medicaid

Rebecca Balliet

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The Haystack Project is a 501(c)3 nonprofit that brings together patients organizations representing patients suffering from or caring for patients with extremely rare diseases. Our mission is to educate policymakers and other stakeholders about the need for policies that recognize the unique circumstances of extremely rare conditions and treatments and expand incentives critical to ensuring they can reach patients.