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The Haystack Project
  • Home/
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January 30, 2023

Haystack's comments on CMS' RFI related to EHB under the ACA→

January 30, 2023/ Michelle Osburn

Read more.

January 30, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
medicaid, medicare, affordable care act

Michelle Osburn

January 30, 2023

Haystack's Sign-On Letter on Proposed Rule on Patient Protection and Affordable Care Act→

January 30, 2023/ Michelle Osburn

Read more.

January 30, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
patient protection, affordable care act

Michelle Osburn

January 13, 2023

Haystack's sign-on letter providing analysis of coverage with evidence development (CED) criteria →

January 13, 2023/ Michelle Osburn

Read more.

January 13, 2023/ Michelle Osburn/ /Source
Letters, Comment Letters
comment letter, medicare

Michelle Osburn

January 13, 2023

Haystack's comments on improving coverage for individuals dully-eligible for Medicare and Medicaid→

January 13, 2023/ Michelle Osburn

Read more.

January 13, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
comment letter, medicare, medicaid

Michelle Osburn

December 30, 2022

Gene therapy trial shows promise for treating ‘bubble boy’ syndrome. Now comes the hard part→

December 30, 2022/ Michelle Osburn

Read more.

December 30, 2022/ Michelle Osburn/ /Source
Patient Stories

Michelle Osburn

December 15, 2022

Revenge of the gaslit patients→

December 15, 2022/ Michelle Osburn

Read more.

December 15, 2022/ Michelle Osburn/ /Source
Patient Stories

Michelle Osburn

December 12, 2022

Like Celine Dion, Pennsylvania man is fighting Stiff Person Syndrome 'with everything I have’→

December 12, 2022/ Michelle Osburn

Read more.

December 12, 2022/ Michelle Osburn/ /Source
Patient Stories

Michelle Osburn

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 28, 2022

Finance Democrats Call for More Consumer Protections in Medicare Advantage→

November 28, 2022/ Michelle Osburn

Read more.

November 28, 2022/ Michelle Osburn/ /Source
medicare

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

November 03, 2022

Haystack Response to CMS' Make Your Voice Heard RFI→

November 03, 2022/ Michelle Osburn

Read here.

November 03, 2022/ Michelle Osburn/ /Source
Letters
other issues, medicare, medicaid

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 07, 2022

FDA needs to be more flexible assessing rare →

September 07, 2022/ Michelle Osburn

Read more.

September 07, 2022/ Michelle Osburn/ /Source
Patient Stories
news

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

June 17, 2022

Haystack Project's reply to CMS' Hospital Inpatient Prospective Payment Systems→

June 17, 2022/ Michelle Osburn

Read more.

June 17, 2022/ Michelle Osburn/ /Source
Letters
medicare, news

Michelle Osburn

June 14, 2022

Press Release: Haystack Project Applauds the Inclusion of the HEART Act in the User Fee Package→

June 14, 2022/ Michelle Osburn

Read more.

June 14, 2022/ Michelle Osburn/ /Source
Reports
HEART Act, news

Michelle Osburn

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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.