Meet Family Leaders

Meet family leaders, Just like you.

In 2023, the national family center gathered leaders from across the country to share their stories.

These face-to-face accounts are designed to empower and help individuals and families of children with a genetic condition. Each story and account is unique. Together, we break them down into four common themes: definition of a leader, advice for future leaders, navigating common struggles, and solutions.

What is a family leader?

Leadership comes in many different forms. Sometimes when we hear the word leadership we may think exclusively of an elected leader or someone whose job it is to lead an organization. But as parents of children with disabilities or special health care needs, we have all used leadership skills.

For example, have you called the doctor’s office to make an appointment, gathered people together for a celebration, or used the Internet to learn more about a topic? This is the beginning of leadership for families. These are all skills that are used by leaders. Many times we don’t realize what we do in our everyday life displays leadership skills. Maybe some of you are aware of your skills and have been making a difference in your community. The following illustrates are first-person account of family leaders reflecting on their journey.

The Shared Journey

Many children and their families across the world have to live and cope with the medical, psychological, and social consequences of a rare condition. Due to a low prevalence of each rare disorder, knowledge about most rare disorders is sparse both in society and among health care professionals. Consequences of the lack of knowledge about rare disorders lead to diagnostic mistakes, delays in diagnosis, and lack of information of high quality.

You are not alone. Family Leaders across the country understand the struggle and are fighting to make a difference. We need leaders now more than ever. The following is an account of common struggles leaders face in their journey.

Advice for Family Leaders

Family Leaders use powerful leadership skills and abilities to manage their household every day and guide their children in the little and big tasks of life. The same can be said for advocacy. Leaders who explicitly communicate, interact, and advance the vision for patient and family engagement help push the needle forward.

Below is an acount of real-world advice from family leaders fighting to make a difference.

The importance of family leaders.

Looking Forward

Families with young children are recognized as experts on their children, but many maternal and early childhood systems are not currently designed to meaningfully integrate this expertise into planning, implementing, and making decisions about early childhood services. They traditionally advocate, share stories, and even give feedback on programmatic design, but frequently are provided with limited opportunities to engage in family-led leadership and influence decision-making.

Family Leaders are needed now more than ever.