Our Story


DSMIG-USA is a group of health professionals committed to promoting the optimal health care and wellness of individuals with Down syndrome (DS) across the lifespan.

To accomplish this, DSMIG-USA will:

  • Educate professionals on the latest research and comprehensive care regarding Down syndrome. 
  • Facilitate networking among professionals caring for individuals with Down syndrome. 
  • Mentor the next generation of healthcare professionals. 
  • Identify, create, and disseminate best practices of care. 
  • Support development of Down syndrome clinics.
  • Advocate for the needs and well-being of people with Down syndrome and their families through community collaborations. 


The vision of DSMIG-USA is a world in which all persons with Down syndrome have access to optimal health care from professionals who have knowledge and expertise regarding the full spectrum of their health and wellness needs, are guided by evidence-based standards of care and have access to current information about state-of-the-art interventions and research results. All persons with Down syndrome should be supported to function at their full potential in all aspects of life and participate in their own health and wellness.


DSMIG-USA believes all individuals with Down syndrome:

  • Are worthy of quality health care in age-appropriate medical homes and of living a rich, full life.
  • Can strive for wellness and are able to be active participants in their health care to the degree at which they can engage in decision making.
  • Should receive high quality, interdisciplinary care from professionals using the highest standards of professional ethics and objective and evidence-based information.

Non-Discrimination Policy

DSMIG-USA® does not and shall not discriminate on the basis of race, color, religion, ethnicity, national origin, gender, gender identity, gender expression, age, disability, marital status, sexual orientation, or military status, in any of its activities or operations.


The first meeting of what is now DSMIG-USA® was held in Cincinnati on November 18, 1988. Cincinnati was the site of the annual convention of the National Down Syndrome Congress (NDSC) that year, and a number of Down syndrome clinic directors were invited speakers. Dr. Bonnie Patterson, Director of the Down Syndrome clinic at Cincinnati Children’s Hospital Medical Center, organized a meeting of the clinic directors. This first gathering of 14 professionals led to the establishment of an annual meeting attended by a multidisciplinary group of professionals who work in Down syndrome clinics or whose professional work otherwise involves direct care, education or research in the field of Down syndrome.

This annual meeting has been an important forum for the sharing of common clinical concerns, discussion of best practices and identification of the gaps in knowledge and care for individuals with Down syndrome. Members developed and revised several versions of the Down syndrome health care guidelines which were widely distributed and utilized by both families and professionals. The need for a common database was identified early on and the discussions at these meetings laid the groundwork for subsequent implementation of database projects at a number of DS clinics. Over the years a professional listserv was administrated at various times by Sheila Cannon, MEd, and Dr. Phil Mattheis was invaluable in keeping the group connected. For many years Dr. Jesús Flórez provided the listserv members with a regularly updated list of Down syndrome biomedical reference and abstracts.

At the 1994 Clinic Directors meeting in Charleston, S.C. the group adopted the name Down Syndrome Medical Interest Group and became commonly known as “DSMIG” (pronounced “diz-mig”). Dr. Bonnie Patterson and Dr. William Cohen were the Co-Chairs of this group until 2009.

A leadership group was formed at the 2009 meeting in Sacramento to determine an organizational mission and structure, as well as a strategy to define and advance the goals of the group. The need to continue to involve those professionals newly involved in the field of Down syndrome or unfamiliar with DSMIG was recognized.

DSMIG was restructured as a nonprofit corporation in December 2011 and subsequently was granted federal tax exempt 501(c)(3) status. The official name became Down Syndrome Medical Interest Group–USA (DSMIG-USA®). A formal membership process was established with participation on the listserv as an optional benefit of membership. The tradition of annual meetings has continued with a CME accredited annual symposium.

DSMIG-USA® initiated a strategic planning process in July 2014 when a group comprised of the Board of Directors and other members met in Indianapolis in conjunction with the Annual Symposium. This led to an expanded statement of Mission, Vision and Values (adopted September 2014) and a strategic plan for the next 2 years that identified the following priority areas: annual symposium, website and committee infrastructure.

Since 2014 the leadership of DSMIG-USA® has continued to promote growth of the organization by strengthening infrastructure, increasing membership, expanding the Annual Symposium program, establishing workgroups, and developing relationships with other organizations with whom we share common goals and vision.

To further help move the organization forward DSMIG-USA engaged Raybourn Group International, Inc. in January 2020 to assist with organization management and day-to-day operations.