RARE Advocacy Exchange Session 8, Knowing Your Rare Rights

October 21, 2025

This session recording is from Oct. 16, 2025

Rare Advocacy Exchange Session 8:

Knowing the Rights for Your RARE Child (and Yourself!)

Moderator: Kelley Coleman, Rare mom; Author

Panelists:

Michele Erwin, President & Founder, All Wheels Up, Rare mom
Benita Talati, Rare Individual / Attorney
Bo Bigelow, Rare dad, Attorney, Co-Founder Foundation for Hao-Fountain Syndrome, Co-founder The Disorder Channel

Session Summary

This session explored how individuals and families in the rare disease community can understand and assert their rights across education, healthcare, employment, and travel. Moderator Kelly Coleman led a dynamic conversation with three advocates whose personal experiences shaped their expertise — a rare mom focused on access, a self-advocate championing workplace inclusion, and an attorney guiding families through education and disability law.

Panelists shared key legal frameworks that protect people with disabilities, offered practical tools for navigating complex systems, and emphasized that advocacy is most effective when grounded in knowledge, documentation, and collaboration. The discussion reinforced that accommodations are not privileges but legal rights that ensure access, dignity, and inclusion for rare individuals and their families.

Key Themes

Understanding the Laws that Protect You
Panelists reviewed foundational U.S. disability protections:

Americans with Disabilities Act (ADA): Prohibits discrimination across employment, public services, and accommodations, covering both visible and invisible disabilities.
Air Carrier Access Act (ACAA): Prevents discrimination in air travel and was the blueprint for the ADA.
Individuals with Disabilities Education Act (IDEA): Ensures free and appropriate public education and related services.
Section 504 of the Rehabilitation Act: Provides equal access to education for those who may not qualify for special education services.

From Self-Advocacy to System Change
Families and rare individuals must know their rights before entering IEP meetings, workplaces, or healthcare systems. Using evidence, recording meetings (where legal), and keeping communications in writing builds strong advocacy foundations.

Collaboration Over Confrontation
Advocacy is most effective when approached through partnership. Whether working with schools, airlines, or insurers, constructive collaboration and data-driven dialogue often lead to more lasting outcomes than adversarial approaches.

Access Is a Right, Not an Extra
Bonita reminded attendees that accommodations are part of equitable access—not special favors. Understanding this reframes advocacy from asking for help to asserting legal entitlements.

Documentation Is Power
Detailed notes, written correspondence, and clear records are essential in navigating institutions, appealing denials, and preserving accountability.

Navigating Insurance and Systems of Care
Understanding policy language, following appeals processes, and knowing who reviewed your claim (and their qualifications) can determine outcomes. Reading plan documents, documenting every call, and escalating when necessary are core skills of successful advocacy.

Staying Calm and Grounded
When advocacy encounters resistance, remaining calm, taking a breath, and returning to the facts helps preserve credibility and power. Emotional regulation allows advocates to sustain long-term impact.

Key Takeaways

Prepare and document. Know your rights, laws, and policies before engaging with schools, doctors, or service providers.
Seek partnership. Approach institutions as allies when possible, while staying firm in expectations.
Model self-advocacy. Involve children early in conversations about consent and disclosure.
Know your resources. Use reputable tools such as:
- wrightslaw.com for IEP and 504 information
- COPAA (Council of Parent Attorneys and Advocates) for local advocates
- TSA Cares and the Hidden Disabilities Sunflower Program for accessible travel
- State Disability Rights offices for case support
Report and follow through. File formal complaints when discrimination or safety incidents occur to create accountability and systemic change.

Next Steps

For advocates and caregivers: Review your IEP, 504, or insurance documentation; identify where additional rights or services may apply.
For rare disease organizations: Share rights-based guidance, Quick Guides, and state-specific resources with your communities. Embed practical, rights-focused education into future programs to strengthen self-advocacy and legal literacy across the rare community.