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The Haystack Project
  • Home/
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June 01, 2022

The Access to Rare Indications Act could be a game-changer for millions of Americans→

June 01, 2022/ Michelle Osburn

Read more.

June 01, 2022/ Michelle Osburn/ /Source
rare

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

April 29, 2022

April 2022 Newsletter→

April 29, 2022/ Michelle Osburn

Read here.

April 29, 2022/ Michelle Osburn/ /Source

Michelle Osburn

April 29, 2022

Haystack's AA Pathway "Reforms"

April 29, 2022/ Michelle Osburn

Read more.

April 29, 2022/ Michelle Osburn/ /Source
Position Statements
advocacy, other issues

Michelle Osburn

April 28, 2022

New bill calls for more data and new development approaches on orphan drug development→

April 28, 2022/ Michelle Osburn

Read more.

April 28, 2022/ Michelle Osburn/ /Source
news

Michelle Osburn

March 07, 2022

STAT on Access to Rare Indications Act

March 07, 2022/ Michelle Osburn

Read more here.

March 07, 2022/ Michelle Osburn/ /Source
news, rare

Michelle Osburn

February 24, 2022

Patient Group Support letter for the Access to Rare Indications Act (HR 6160)→

February 24, 2022/ Michelle Osburn

Read more.

February 24, 2022/ Michelle Osburn/ /Source

Michelle Osburn

February 22, 2022

Access to Rare Indications: Ensure Rare Disease Parity in Accessing Medically Necessary Care in Medicare and Medicaid→

February 22, 2022/ Michelle Osburn

Read more.

February 22, 2022/ Michelle Osburn/ /Source

Michelle Osburn

February 21, 2022

Rep. Matsui releases "Dear Colleagues" letter, asking for co-sponsors for HR6160.→

February 21, 2022/ Michelle Osburn

Read more.

February 21, 2022/ Michelle Osburn/ /Source
Letters
rare

Michelle Osburn

February 21, 2022

Rare Disease Week invitation→

February 21, 2022/ Michelle Osburn

Read more.

February 21, 2022/ Michelle Osburn/ /Source

Michelle Osburn

February 21, 2022

Haystack seal→

February 21, 2022/ Michelle Osburn

Haystack seal

February 21, 2022/ Michelle Osburn/ /Source

Michelle Osburn

February 17, 2022

Haystack Project To Respond to CMS RFI on Access to Care and Coverage for Medicaid Patients→

February 17, 2022/ Michelle Osburn

Read more.

February 17, 2022/ Michelle Osburn/ /Source

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

January 12, 2022

How medicine erased Black women from a "White Man's Disease"→

January 12, 2022/ Michelle Osburn

Read more.

January 12, 2022/ Michelle Osburn/ /Source
Patient Stories
heat

Michelle Osburn

January 12, 2022

Copay Accumulator Fact Sheet→

January 12, 2022/ Michelle Osburn

Read more.

January 12, 2022/ Michelle Osburn/ /Source
Patient Assistance Progra, PatientAssistancePrograms
copay, advocacy, HELP Act

Michelle Osburn

January 10, 2022

Press Release: New Report for Uveal Melanoma Patients→

January 10, 2022/ Michelle Osburn

Read more.

January 10, 2022/ Michelle Osburn/ /Source
Reports
press release, news

Michelle Osburn

December 26, 2021

POV Report - Uveal Melanoma→

December 26, 2021/ Michelle Osburn

Read more.

December 26, 2021/ Michelle Osburn/ /Source
Reports
uveal melanoma, pov, other issues, ICER, advocacy

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

December 07, 2021

Haystack Project Applauds Introduction of the Access to Rare Indications Act→

December 07, 2021/ Michelle Osburn

Read more

December 07, 2021/ Michelle Osburn/ /Source
Letters
rare, RIA, medicare, medicaid, Haystack

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.