About Us

The Hypochondroplasia Foundation grew out of something very simple: a need for information and connection.

More than 15 years ago, a small group of families came together through the Hypochondroplasia Families Facebook group. At the time, there was very little information available, and even fewer places to turn to for shared experience or guidance.

What started as a space to ask questions and exchange stories gradually became a trusted global community. Today, it connects more than 1,500 families navigating life with hypochondroplasia.

Within that community, patterns began to emerge. Families spoke about long journeys to diagnosis, limited access to reliable information, and uncertainty about what the future might hold. For many, hypochondroplasia was something they had never heard of before their child was diagnosed. Over time, it became clear that connection alone was not enough. Many families were facing similar challenges and needed more than shared experience.

There was a need to go further, to raise awareness, improve access to reliable information, support research, and ensure that the voices of families are heard. The Hypochondroplasia Foundation is a natural next step in that journey. 

HYPOCHONDROPLASIA FOUNDATION is a CLG - Company Limited by Guarantee incorporated in Ireland under the Companies Act 2014.