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ARPKD/CHF Alliance — improving the lives of those affected
Our Mission

Improving lives — together.

“To educate, advocate, support and advance research specific to ARPKD/CHF, with the purpose of improving the lives of those affected.”

The four pillars of our work

Educate

We translate complex science into plain-language guidance for families, build trustworthy resources, and ensure no one navigates diagnosis without a guide.

Advocate

We amplify family voices with the NIH, FDA, and medical community — and we work to ensure ARPKD/CHF is never forgotten in rare disease policy.

Support

We connect families across the country and around the world, provide bereavement resources, and stand beside parents through every stage of the journey.

Advance Research

We fund and partner on research projects specifically focused on ARPKD/CHF — because progress for our children depends on science.