Rare Really Isn’t That Rare

At The Andelyn Foundation, we believe understanding leads to compassion, compassion builds community, and community carries hope.

What is a Rare Disease?

In the U.S., a rare disease is defined as one that affects fewer than 200,000 people. Yet, when seen together, rare diseases are far from uncommon.

Behind each statistic is a family searching for answers, for options, and for hope. For many, that search can take years — often filled with uncertainty, financial stress, and emotional exhaustion.

95%

95% currently have no FDA-approved treatment.

10k

More than 10,000 rare diseases have been identified.

50%

Half of those affected with rare diseases are children.

1 in 10

They affect 1 in 10 Americans, nearly 30 million people.

Time

Long diagnostic journeys that can take 5-7 years or more.

Travel

Frequent travel for specialized treatment or clinical trials.

Costs

High medical costs that insurance doesn’t always cover.

Isolation

Emotional isolation from facing something few others understand.

The Impact on Families

Families living with rare and ultra-rare diseases face challenges few can imagine. That’s why awareness matters — because every story shared creates understanding, and every act of compassion helps lighten the load.

Why Awareness Matters

Awareness is more than knowledge — it’s connection. When we learn, listen, and share, we:

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Drive research and treatment development for conditions once overlooked.
Connect patients and families to critical networks and resources.
Help replace isolation with understanding and stigma with support.

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When we make the unseen seen, we don’t just raise awareness — we open doors to empathy, funding, and change.

How You Can Help

Rare disease research and support is a long journey — one that requires all of us. With your help, The Andelyn Foundation can continue turning awareness into action and compassion into hope — for deserving families waiting to be seen, supported, and understood.