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.

Resources

What happens when a rare disease drug seems to work, but the health care system doesn’t?→

This father built a gene therapy for his son. Now comes the harder part: saving others’ children, too→

When a Miracle Cure Is Left on the Shelf→

Gene Therapy Allows an 11-Year-Old Boy to Hear for the First Time→

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

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

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

A young boy’s nightmare diagnosis, and the $3 million one-time treatment that will likely save his life→

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

Revenge of the gaslit patients→

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

FDA needs to be more flexible assessing rare →

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

The parents hoped an existing drug might keep their kids from having seizures. Then they saw the price→

ALS groups to the FDA and drug sponsors: ‘We won’t be played again’→

The Real Work of Parenting a Rare Girl→

NY Times: It will consume your life: 4 families take on rare diseases→

Rare in Common Interview→

Texas mom helps local researchers find treatments for genetics causes of autism→

Saving Mila: How a tailor-made therapy, developed in a flash, may have halted a young girl’s rare disease→

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