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There are plenty of reasons why my life is rare

Summary by Cystic Fibrosis News Today
Several pieces of my life puzzle happen to be rare. First thing’s first: I have cystic fibrosis (CF), a rare disease that affects about 40,000 people in the United States. (The U.S. Food and Drug Administration considers a disease rare if it affects fewer than 200,000 people.) More significantly, I’m in the 10% of the CF population who don’t qualify for modulators because of my rare mutations. That means the cutting-edge miracle drugs don’t appl…
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swns.liveswns.live

I’m aging 10 times faster than normal because of a rare disease — but getting older is a privilege

A woman living with a one-in-a-million disease which makes her age 10 times faster than the average person says aging is a "privilege."

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Cystic Fibrosis News TodayCystic Fibrosis News Today

There are plenty of reasons why my life is rare

Several pieces of my life puzzle happen to be rare. First thing’s first: I have cystic fibrosis (CF), a rare disease that affects about 40,000 people in the United States. (The U.S. Food and Drug Administration considers a disease rare if it affects fewer than 200,000 people.) More significantly, I’m in the 10% of the CF population who don’t qualify for modulators because of my rare mutations. That means the cutting-edge miracle drugs don’t appl…

Read Full Article
Public Health UpdatePublic Health Update

A Global Call to Action for the 300 Million People Living with a Rare Disease

Rare Disease Over 6,000 rare diseases are characterised by a wide range of conditions and symptoms that can vary not only between diseases but also among individuals with the same… The post A Global Call to Action for the 300 Million People Living with a Rare Disease appeared first on Public Health Update.

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Public Health Update broke the news in on Friday, February 28, 2025.
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