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Rare and Relentless
Home
Ultra Blog
About
Contact
Donations to Keep this going!
Home
Ultra Blog
About
Contact
Donations to Keep this going!
Through the Noise: Rare Disease Still Deserves Equity
Gillian Hall Sapia 4/10/25 Gillian Hall Sapia 4/10/25

Through the Noise: Rare Disease Still Deserves Equity

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This Isn’t Baby Formula—It’s Lifesaving Medicine: How Tariffs and Supply Chain Failures Endanger Kids with Galactosemia
Gillian Hall Sapia 4/9/25 Gillian Hall Sapia 4/9/25

This Isn’t Baby Formula—It’s Lifesaving Medicine: How Tariffs and Supply Chain Failures Endanger Kids with Galactosemia

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Not Just Numbers: The Human Cost of Delayed Rare Disease Therapies
Gillian Hall Sapia 4/6/25 Gillian Hall Sapia 4/6/25

Not Just Numbers: The Human Cost of Delayed Rare Disease Therapies

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Federal Funding Fights: How Lawsuits Are Shaping NIH, FDA, and CMS Futures
Gillian Hall Sapia 4/5/25 Gillian Hall Sapia 4/5/25

Federal Funding Fights: How Lawsuits Are Shaping NIH, FDA, and CMS Futures

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System Failure: $7.8 Million per Galactosmeia Patient in Preventable Burden
Gillian Hall Sapia 4/4/25 Gillian Hall Sapia 4/4/25

System Failure: $7.8 Million per Galactosmeia Patient in Preventable Burden

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The $2.5 Trillion Math Problem That Rare Disease Families Can’t Afford to Ignore
Gillian Hall Sapia 4/1/25 Gillian Hall Sapia 4/1/25

The $2.5 Trillion Math Problem That Rare Disease Families Can’t Afford to Ignore

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How to Contact Congress staffers:
Gillian Hall Sapia 3/22/25 Gillian Hall Sapia 3/22/25

How to Contact Congress staffers:

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Fun Advocacy Ask: Name a Baby Zebra After a Rare Disease Warrior!
Gillian Hall Sapia 3/21/25 Gillian Hall Sapia 3/21/25

Fun Advocacy Ask: Name a Baby Zebra After a Rare Disease Warrior!

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New Year, Same Fight: Why 2025 Demands More Than Hope
Gillian Hall Sapia 3/21/25 Gillian Hall Sapia 3/21/25

New Year, Same Fight: Why 2025 Demands More Than Hope

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Ultra Rare
Gillian Hall Sapia 3/11/19 Gillian Hall Sapia 3/11/19

Ultra Rare

It all begins with an idea.

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