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May 18, 2018

340B Stakeholder Letter→

May 18, 2018/ Rebecca Balliet

Read the letter.

May 18, 2018/ Rebecca Balliet/ /Source
Letters, Comment Letters
340b

Rebecca Balliet

April 13, 2018

Your child has what? Navigating the challenges of a rare medical disease→

April 13, 2018/ Rebecca Balliet
April 13, 2018/ Rebecca Balliet/ /Source

Rebecca Balliet

March 27, 2018

Patient Voices: Rare Diseases – The New York Times→

March 27, 2018/ Rebecca Balliet
March 27, 2018/ Rebecca Balliet/ /Source
Patient Stories

Rebecca Balliet

March 19, 2018

AMERICAN PORPHYRIA FOUNDATION LETTER

March 19, 2018/ Rebecca Balliet

Read the letter.

March 19, 2018/ Rebecca Balliet/
Letters

Rebecca Balliet

February 28, 2018

What life is like for kids with rare genetic conditions→

February 28, 2018/ Rebecca Balliet
February 28, 2018/ Rebecca Balliet/ /Source
Patient Stories

Rebecca Balliet

February 27, 2018

Safe Harbors for Rare→

February 27, 2018/ Rebecca Balliet

Download now.

February 27, 2018/ Rebecca Balliet/ /Source
PatientAssistancePrograms
One pager

Rebecca Balliet

February 26, 2018

Solicitation of New Safe Harbors and Special Fraud Alerts→

February 26, 2018/ Rebecca Balliet
Solicitation of New Safe Harbors and Special Fraud Alerts

The Haystack Project urges the OIG to develop a safe harbor to enable financial assistance from charitable entities, and directly from a manufacturer, so that patients can access the rare disease treatment they need.

Read More
February 26, 2018/ Rebecca Balliet/ /Source
PatientAssistancePrograms, Letters, Comment Letters
safe harbors
October 20, 2017

Haystack Project Joins Fellow Patient Orgs in Calling Attention to the MassHealth Section 1115 Demonstration Amendment→

October 20, 2017/ Rebecca Balliet

Read more.

October 20, 2017/ Rebecca Balliet/ /Source
Letters, Comment Letters
Medicaid

Rebecca Balliet

September 25, 2017

ICER Ultra-Rare Disease Comment→

September 25, 2017/ Rebecca Balliet

Read more.

September 25, 2017/ Rebecca Balliet/ /Source
Letters, Comment Letters
ICER

Rebecca Balliet

September 12, 2017

PPS-340b comment Letter→

September 12, 2017/ Rebecca Balliet

Read more

September 12, 2017/ Rebecca Balliet/ /Source
Letters, Comment Letters
340b, Medicare

Rebecca Balliet

September 10, 2017

MACRA Letter - CY 2018 Updates to the Quality Payment Program CMS-5522-P→

September 10, 2017/ Rebecca Balliet

Read more

September 10, 2017/ Rebecca Balliet/ /Source
Comment Letters, Letters
Medicare

Rebecca Balliet

September 07, 2017

September 7, 2017 Agenda→

September 07, 2017/ Rebecca Balliet

Read more.

September 07, 2017/ Rebecca Balliet/ /Source
Agendas

Rebecca Balliet

August 31, 2017

August 31, 2017 Agenda→

August 31, 2017/ Rebecca Balliet

Read more.

August 31, 2017/ Rebecca Balliet/ /Source
Agendas

Rebecca Balliet

August 24, 2017

Orphan Drug Assessment: Final Meeting Report and Proposed Framework Changes→

August 24, 2017/ Rebecca Balliet
August 24, 2017/ Rebecca Balliet/ /Source
ICER

Rebecca Balliet

August 24, 2017

Chimeric Antigen Receptor T-Cell Therapy for B-Cell Cancers: Effectiveness and Value→

August 24, 2017/ Rebecca Balliet

Read more.

August 24, 2017/ Rebecca Balliet/ /Source
ICER

Rebecca Balliet

August 24, 2017

August 24, 2017 Agenda→

August 24, 2017/ Rebecca Balliet

Read more.

August 24, 2017/ Rebecca Balliet/ /Source
Agendas

Rebecca Balliet

August 21, 2017

Ultra Rare Stakeholders QPP Comment→

August 21, 2017/ Rebecca Balliet

Read more

August 21, 2017/ Rebecca Balliet/ /Source
Comment Letters, Letters
Medicare

Rebecca Balliet

August 06, 2017

Comment Letter on IPPS from National MPS Society→

August 06, 2017/ Rebecca Balliet
Comment Letter on IPPS from National MPS Society

Read comments from the National MPS Society on IPPS urging making access to treatment for patients with rare diseases a priority.

Read More
August 06, 2017/ Rebecca Balliet/ /Source
Comment Letters
Medicare
August 06, 2017

Proposed adaptation of the ICER value framework for the assessment of treatments for ultra-rare conditions

August 06, 2017/ Rebecca Balliet
Proposed adaptation of the ICER value framework for the assessment of treatments for ultra-rare conditions

Explore the ICER value framework which presents a set of proposed adaptations to the ICER value assessment framework when the topic under review is a treatment for an “ultra-rare” condition. 

Read More
August 06, 2017/ Rebecca Balliet/
Reports
ICER
July 27, 2017

July 27, 2017 Agenda→

July 27, 2017/ Rebecca Balliet

Download

July 27, 2017/ Rebecca Balliet/ /Source
Agendas

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.