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.

Our mission is to improve the lives of those living with hypochondroplasia through education, awareness, research, and mutual support.

We work to:

• Provide trusted, accessible information to support individuals and families at every stage of their journey 
• Raise awareness and promote understanding of hypochondroplasia among healthcare professionals and the wider public 
• Advance and support research that deepens understanding and improves outcomes 
• Build and strengthen a global community, creating opportunities for connection, shared learning, and mutual support 
• Advocate for improved care, resources, and recognition for those living with hypochondroplasia

Everything we do is grounded in lived experience and guided by the needs of the community.

At the heart of the Foundation is a simple belief: no family should have to navigate hypochondroplasia alone, and everyone deserves access to the knowledge and care they need.