TARS Mental Health & Emotional Wellness Support Program

Why This Program Matters

TAR Syndrome is an ultra-rare genetic condition. Its rarity means families often struggle to find others who understand, medical uncertainty can create emotional strain, children may face stigma, and caregivers experience stress and burnout. Research across rare-disease communities shows increased emotional stress compared to the general population. This program exists to support those needs.

What the Program Provides

Our program helps families through peer support, caregiver circles, youth community
connections, counseling referrals, grief resources, educational tools, and advocacy support.

Suicide-Prevention Awareness

Although there is no TAR-specific suicide rate data, we recognize that mental-health
struggles may occur in rare-disease communities. Our program provides awareness education, emotional-support training, and crisis-resource guidance to encourage early help-seeking.

Guiding Principles &
Measurable Impact

Our work is built on compassion, dignity, inclusion, confidentiality, empowerment, and family-centered care.  This program strengthens families, reduces isolation, and improves emotional wellness outcomes through sustained support, education, and connection.