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Big News! Big Changes! Bigger Plans!

Big News! Big Changes! Bigger Plans!

EXCITING NEWS: Registration Now Open for NALCN 2025!

EXCITING NEWS: Registration Now Open for NALCN 2025!

Patient Families: Make your mark!

Patient Families: Make your mark!

From Milestones to Momentum: Reflecting on 2024, Building in 2025

From Milestones to Momentum: Reflecting on 2024, Building in 2025

Patient Data Collection through RareX is Live

Patient Data Collection through RareX is Live

CHF Science Around the World

CHF Science Around the World

It's our 1st Birthday!

It's our 1st Birthday!

Skin to Stem: One family's odyssey to the space city to support CLIFAHDD research

Skin to Stem: One family's odyssey to the space city to support CLIFAHDD research

Project Wellcast: Clinical Trial

Project Wellcast: Clinical Trial

Phenotype Study Webinar

Phenotype Study Webinar

Scientific Update

Scientific Update

Rare Disease Day

Rare Disease Day

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