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The Haystack Project
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  • Priorities/
  • PROTECT Rare/
  • FDA/
    • Modernizing-FDA
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    • Speaker Series
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September 20, 2023

Medicare Prescription Payment Plan Guidance →

September 20, 2023/ Tiara Logan

Read more.

September 20, 2023/ Tiara Logan/ /Source
Comment Letters, Letters
IRA, Medicare

Tiara Logan

August 21, 2023

Haystack Comments on CMS Proposed Evidence Standards NCD→

August 21, 2023/ Tiara Logan

Read more.

August 21, 2023/ Tiara Logan/ /Source
Comment Letters, Letters
Medicare, Medicaid, cms

Tiara Logan

August 21, 2023

Haystack Comments CMS Proposal on CED→

August 21, 2023/ Tiara Logan

Read more.

August 21, 2023/ Tiara Logan/ /Source
Comment Letters, Letters
medicare, medcaid

Tiara Logan

August 17, 2023

Access to Rare Indications Toolkit→

August 17, 2023/ Michelle Osburn

Read more.

August 17, 2023/ Michelle Osburn/ /Source
Letters
rare

Michelle Osburn

August 17, 2023

DRAFT: Haystack expresses gratitude for the support of Representatives and the "PROTECT Act"→

August 17, 2023/ Michelle Osburn

Read more.

August 17, 2023/ Michelle Osburn/ /Source
Letters, Comment Letters
rare, protect

Michelle Osburn

August 04, 2023

Alpha Rev's Casey McPherson Gave Up a Life in Music to Cure His Daughter's Rare Disease→

August 04, 2023/ Michelle Osburn

Read more.

August 04, 2023/ Michelle Osburn/ /Source
Patient Stories
patient

Michelle Osburn

July 31, 2023

Haystack comments on CMS' Information Collection Request for Negotiation Data Elements (CMS-10847)→

July 31, 2023/ Michelle Osburn

Read more.

July 31, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
cms, icr, IRA

Michelle Osburn

July 28, 2023

Haystack's responses to the bipartisan RFI on potential refinements to the 340B drug discount program→

July 28, 2023/ Michelle Osburn

Read more.

July 28, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
RFI, drug, 340b

Michelle Osburn

July 14, 2023

These twins share everything including a rare disease and surgery on the same day→

July 14, 2023/ Michelle Osburn

Read more.

July 14, 2023/ Michelle Osburn/ /Source
Patient Stories
patient

Michelle Osburn

July 12, 2023

A young girl’s custom gene therapy hints at a framework for tailored rare disease treatments→

July 12, 2023/ Michelle Osburn

Read more.

July 12, 2023/ Michelle Osburn/ /Source
Patient Stories
patient

Michelle Osburn

July 03, 2023

Haystack's Comments on Craft of bill on State Integrated Care Programs for Dual Eligible Individuals→

July 03, 2023/ Michelle Osburn

Read more.

July 03, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
cms, medicare, Medicaid, dual-eligible

Michelle Osburn

July 03, 2023

Haystack Comments on CMI's Proposed Rule on Ensuring Medicaid Access →

July 03, 2023/ Michelle Osburn

Read more.

July 03, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
Medicaid

Michelle Osburn

July 03, 2023

Haystack's comments on CMS’ proposed rule on the Medicaid and Children’s Health Insurance Program (CHIP) →

July 03, 2023/ Michelle Osburn

Read more.

July 03, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
cms, CHIP, Medicare, Medicaid

Michelle Osburn

June 20, 2023

Haystack Submits Feedback on the Counteroffer ICR→

June 20, 2023/ Michelle Osburn

Read more.

June 20, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
IRA

Michelle Osburn

June 09, 2023

Haystack comments on CMS' proposed rule to update IPPS→

June 09, 2023/ Michelle Osburn

Read more.

June 09, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
medicare

Michelle Osburn

June 05, 2023

Haystack provides feedback on the upcoming implementation of the Inflation Reduction Act’s (IRA) provisions related to Medicare Part D redesign→

June 05, 2023/ Michelle Osburn

Read more.

June 05, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
IRA

Michelle Osburn

May 22, 2023

Haystack IRA data elements ICR 5.22.23

May 22, 2023/ Tiara Logan

Read here.

May 22, 2023/ Tiara Logan/ /Source
Letters, Comment Letters
Medicaid, medicare

Tiara Logan

May 05, 2023

Haystack's letter to NASEM Requesting a meeting regarding the HEART Act→

May 05, 2023/ Michelle Osburn

Read more.

May 05, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
HEART Act, GAO, NAM, FDA

Michelle Osburn

May 04, 2023

Haystack requests meeting with GAO leadership and staff→

May 04, 2023/ Michelle Osburn

Read more.

May 04, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
HEART Act, GAO, NAM, FDA

Michelle Osburn

April 14, 2023

Haystack's comments on CMS' issuance of its initial set of guidance on implementation of the Inflation Reduction Act of 2022→

April 14, 2023/ Michelle Osburn

Read more.

April 14, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
IRA

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.