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Keep Rare & Relentless Independent:
Rare & Relentless isn’t backed by industry, foundations, or major sponsors. It cost me on average $600 a month:
It’s powered by one mom, one nurse, one advocate—working late nights, reading FDA documents, digging through policy reports, and translating lived experience into advocacy that families and policymakers can actually use.
Every post here takes time, research, and emotional labor.
Every data point shared has the potential to change policy, unlock funding, or save a life.
To keep this work sustainable, Rare & Relentless needs $600 per month to cover the real, basic costs of independent advocacy:
keeping the site live and secure
making complex science and policy understandable
reaching families, clinicians, and decision-makers
showing up in person when it matters
Advocacy travel alone averages four trips per year, with each trip costing about $1,500 in flights, lodging, and basic expenses. The monthly budget helps offset only a portion of that cost—but without showing up, rare disease families remain invisible.
If this blog has informed you, moved you, or given you words you didn’t have, please consider supporting it.
Even $1 helps keep this work going.
Every contribution helps protect independent, patient-led advocacy—and keeps this space honest, unfiltered, and relentless.
Why give?
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We Speak When the System Doesn’t.
Rare diseases are often ignored, underfunded, and misunderstood. Rare and Relentless gives voice to those who are usually left out of the conversation—patients, caregivers, and advocates who live the reality every day.
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We Turn Lived Experience Into Action.
Rare and Relentless gives voice to those who are usually left out of the conversation—patients, caregivers, and advocates who live the reality every day.
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We’re Not Stopping—And You Can Help Us Keep Going
We are relentless because we have to be. When you donate, you join a growing network of families, researchers, and advocates who refuse to accept “too rare to matter.”
“It all begins with an idea. Maybe you want to launch a business.”
Keith Finley
“It all begins with an idea. Maybe you want to launch a business.”
Monet Goode
“It all begins with an idea. Maybe you want to launch a business.”
Channing Lee
Make a donation.
It all begins with an idea. Maybe you want to launch a business. Maybe you want to turn a hobby into something more. Or maybe you have a creative project to share with the world. Whatever it is, the way you tell your story online can make all the difference.
FAQs
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It all begins with an idea. Maybe you want to launch a business. Maybe you want to turn a hobby into something more. Or maybe you have a creative project to share with the world. Whatever it is, the way you tell your story online can make all the difference.
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It all begins with an idea. Maybe you want to launch a business. Maybe you want to turn a hobby into something more. Or maybe you have a creative project to share with the world. Whatever it is, the way you tell your story online can make all the difference.
-
It all begins with an idea. Maybe you want to launch a business. Maybe you want to turn a hobby into something more. Or maybe you have a creative project to share with the world. Whatever it is, the way you tell your story online can make all the difference.
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It all begins with an idea. Maybe you want to launch a business. Maybe you want to turn a hobby into something more. Or maybe you have a creative project to share with the world. Whatever it is, the way you tell your story online can make all the difference.