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Meet Bernadette

The reality of living
with a rare disease

Bernadette Scarduzio has Charcot-Marie-Tooth Disease (CMT) — one of thousands of rare diseases with no known cure. She’s been through more than two-dozen operations. Decades of physical therapy. Enormous physical and emotional challenges. Yet she remains a tireless advocate for herself and others.

SEE BERNADETTE’S STORY

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donate-arch-1The greatest weight is borne by children

Bernadette was diagnosed when she was eight. In fact, more than
half of all people with rare diseases are children. A third of them
will not live to see their fifth birthday. Because their disease
has no cure. That’s what drives our efforts.

1 out of 2

Patients are in children’s hospitals because of rare diseases

There are

7,000

rare diseases

6,650+

have no cure

350 million

People have rare diseases —
more than HIV and
cancer combined

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Meet Biopontis Alliance

Building bridges of
healing and hope

Find out how we’re advancing promising science into potential treatments for rare diseases that impact more than 350 million children and adults around the world.

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With your support, we can close the gap between basic research and effective treatment — which will lead to a brighter future for Bernadette and the millions of families who live with rare diseases.

Come build with us

GIVE NOW

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We are Guided by and For Patients

Share your story and listen to how others are working with us to find cures.

SHARE

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Join our efforts

Together, we can build bridges to treatments that will improve — and save — the lives of children and adults with rare diseases

GIVE NOW