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  • Home/
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    • Rare Disease Approvals
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October 03, 2018

Richard Engel: Our son’s special needs bring heartbreak, but we have hope – Today Show→

October 03, 2018/ Rebecca Balliet
October 03, 2018/ Rebecca Balliet/ /Source
Patient Stories

Rebecca Balliet

September 23, 2018

Sophie’s search for a cure – multiple system atrophy – You Tube→

September 23, 2018/ Rebecca Balliet
September 23, 2018/ Rebecca Balliet/ /Source
Patient Stories

Rebecca Balliet

August 03, 2018

Lester Holt is visited by young fan with rare genetic disorder – Today Show→

August 03, 2018/ Rebecca Balliet
August 03, 2018/ Rebecca Balliet/ /Source
Patient Stories

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

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

June 14, 2017

Out of the Shadows→

June 14, 2017/ Rebecca Balliet
Out of the Shadows.png
June 14, 2017/ Rebecca Balliet/ /Source
Patient Stories

Rebecca Balliet

May 30, 2017

Meet Ella Murray: The 9-year-old with skin as delicate as a butterfly's wing→

May 30, 2017/ Rebecca Balliet
May 30, 2017/ Rebecca Balliet/ /Source
Patient Stories

Rebecca Balliet

July 14, 2016

McCall PRV Statement→

July 14, 2016/ Rebecca Balliet

Read more.

July 14, 2016/ Rebecca Balliet/ /Source
Patient Stories

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.