Family Voice &
Advocacy Initiative
Listening to Families Equipping Advocates Informing Policy
Families navigating rare diseases, neurodevelopmental conditions, and undiagnosed conditions often understand barriers that systems cannot see from inside the institution.
A diagnosis is not required for inclusion. This work explicitly reaches families still searching for answers.
We are currently seeking Partners.
Family Voices
Listen - Document - Build Evidence
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Up to 30 family interviews (diagnosed & undiagnosed
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Family Advocacy Toolkit
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Summary of key themes and barriers
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Findings Brief for policymakers & stakeholders
Family Advocacy Summit
Educate - Mobilize - Act
A one-day gathering for approximately 50 attendees.
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Advocacy skills training & storytelling
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Includes families still awaiting diagnosis
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Policy panel and "From Story to Policy" session
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Individual Family Advocacy Action Plans
Policy Translation
Analyze - Prioritize - Engage
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Ongoing MCM policy priorities
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Policy and stakeholder briefs
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Legislative & agency engagement
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Research investment priorities for rare disease
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Continued family advocacy opportunities
Why This Matters
Family experience is knowledge. Families see the full picture of a child’s healthcare journey: the symptoms between appointments, the barriers to care, and the moments they struggled to be heard.
We are creating a structured pathway so that knowledge is heard, documented, strengthened, and translated into action.
Where Partners Add Value
Family recruitment and community reach
Advocacy expertise, facilitators, and training resources
Policy and data translation support
Summit support (venue, accessibility, materials, or financial investment)
Long-term collaboration to build sustained infrastructure for family voice
Partnership Opportunity
A $5,000 partnership investment provides meaningful support for the Summit and related family engagement activities.
In-kind contributions (venue, catering, transportation,
materials) are equally valued, as are broader institutional partnerships.
This is an opportunity to invest in family leadership, community voice, and meaningful policy
engagement, not simply an event.