Start a Parent Organization

Interested in starting a parent organization? We hope you’ll find this information helpful as you begin this process.

The NDSC understands the importance of feeling connected within your community. One of the first things we do when we hear from new parents, or parents moving to a new area, is refer them to a local or regional Down syndrome organization. We know that you are best able to help parents “on the ground” in your area.

A Down syndrome organization is a group of parents (and grandparents, siblings, other family members and friends) who are concerned with issues related to Down syndrome. They may also include members who are educators, medical professionals, and others who have an interest in Down syndrome.

These groups can serve many purposes. Some start small and remain intimate circles of people who often become close friends. Others begin to grow, adding programs, services and membership.

Today, the NDSC includes more than 130 local and regional organizations as affiliated members. They are groups of varying sizes and memberships, but they all have at least two things in common: they all started as small group of concerned parents, and they offer parents a place to share information, give and receive emotional support, and work as a team to address common concerns.

The NDSC wants to help you start a successful parent organization! From naming your group, to planning your first meeting, to recruiting volunteers to help you, we are here to provide assistance and advice. Please contact us at for more information.

If you’re looking for resources for your organization, you can find them here.