General Medical Outreach Presentations

During this month’s Medical Outreach Meeting, Dr. Stephanie Meredith led a brainstorming session on developing an introductory medical outreach presentation for a broad range of clinicians. Together, we explored four core questions that can serve as the foundation for an effective outreach presentation:

• What are the basics of Down syndrome?
• What are the most essential facts and components of your organization?
• What key points are most important for clinicians to hear?
• What are the top resources clinicians should know about?

---

Presentation Templates

Based on the ideas generated during the meeting, we co-created a general medical outreach presentation template designed to be adapted for different organizations and clinical audiences.

Download the general medical outreach presentation template:

View example outreach presentations and materials:
https://lettercase.org/education/advocacy-organizations/

---

What are the basics of Down syndrome?

An introductory outreach presentation should begin with clear, accurate, and balanced information. Example points to include:

• Down syndrome (DS) is caused by three copies of chromosome 21 and is associated with some level of intellectual disability and an increased likelihood of certain health conditions, such as heart defects.
• People with Down syndrome attend school, work, build meaningful relationships, participate in decisions that affect them, vote, and contribute to their communities in many ways.
• Babies with Down syndrome can be born to parents of any age. While older parents have a higher individual likelihood, younger parents have more babies overall and therefore account for a larger number of births of babies with DS.
• DS occurs equally in people of all ethnic, racial, religious, and socioeconomic groups.
• Statistics on how many babies are expected to be born with DS in your area.
• Current life expectancy for people with Down syndrome.
• Types of Down syndrome: trisomy 21, translocation, and mosaicism.

---

What are the most essential facts about your organization?

Clinicians benefit from concise, practical information about what your organization offers and how to connect families to your services. Consider including:

• Contact information
• Programs offered (e.g., parent-to-parent, caregiver education)
• Types of staff (e.g., therapists, social workers, family volunteers)
• Life stages served (birth, childhood, adolescence, adulthood, lifespan)
• Cost of services, including which services are free
• Referral process
• Geographic service area
• Events clinicians can attend to engage with your organization and the Down syndrome community (e.g., World Down Syndrome Day walks)

---

What are key points to share with clinicians?

Concise messages can help clinicians immediately foster a more inclusive practice. Example points to include in your presentation:

• Speak directly to people with Down syndrome, not only to caregivers.
• As children grow into adolescence and adulthood, actively involve them in their healthcare decisions.
• Avoid framing Down syndrome as “negative” or “bad news,” especially when discussing a new diagnosis.
• Share social perspectives and social support resources, such as Medicaid, school-based transition services, vocational rehabilitation, and employment supports.
• Use visuals aids and show diverse photos of people with DS.
• Encourage office staff to proactively ask caregivers, “Is there anything we can do to accommodate your loved one?” prior to appointments.

---

What are the top resources to share?

Including trusted, evidence-based resources strengthens your presentation and gives clinicians clear next steps:

• Local Down syndrome clinic
• AAP Guidelines: Health Supervision for Children and Adolescents With Down Syndrome
• GLOBAL Down Syndrome Foundation Guidelines: Medical Care Guidelines for Adults with Down Syndrome
• Down Syndrome Medical Interest Group (DSMIG)
• Down Syndrome Clinic 2 (DSC2U)

---

Thank you to everyone who joined this week’s meeting! To join future Medical Outreach Meetings, email viviane.pederson@geneticsupportfoundation.org!