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Advocacy Tips for Families

A guide to finding your voice, standing strong, and making change.

What is advocacy?

Advocacy means speaking up for your child, your family, and/or your community. Whether you’re working with a school, medical provider, or government office, your voice matters!

Where Advocacy Happens:

  • At the doctor and clinic provider’s office: Ask about treatments, side effects, and what to expect
  • At school: Request evaluations, IEP meetings, or 504 accommodations
  • In the community: Contact legislators, attend town halls, or join support groups
  • Online or in the media: Share your experience to raise awareness


Systems Change Starts with One Story:

When your child receives a rare disease diagnosis, it can feel like your story is being written for you full of medical terms, care plans, and decisions made by others. Here’s the truth: you are the narrator. Your lived experience is powerful.

Sharing your story can help:

  • Doctors understand what matters most to your family
  • Educators see beyond diagnoses and into your child’s strengths
  • Policymakers grasp the real-life impact of healthcare gaps.
  • Other families feel less alone, more helpful, and better equipped

*Use our Share Your Story template to begin drafting your story

Advocacy Tips: (for clinic appointments)

Start with “I” statements:

  • “I want to make sure we understand the next steps.”
  • “I need more time to process this information.”

Document Everything:

  • Keep a binder or digital folder with test results, letters, and notes
  • Have names, titles, and contact info from every provider handy

Ask for clarification:

  • “Can you say that another way?”
  • “Can I repeat back what I heard to make sure I got it right?”

Bring someone with you to appointments/meetings:

  • A friend, family member, or peer support volunteer can help take notes or advocate alongside you.
  • Reach out to community organizations and ask if they have parent advocates available.

Practice Your Story:

  • Sharing your family’s journey helps others understand your perspective, makes an impact, and creates change.

Advocacy Tips: (beyond the clinic)

With Insurance or Caseworkers:

  • Document every call: Write down the name, title, and date of anyone you speak with regarding claims and coverage.
  • Ask for all denials in writing, and request a “peer-to-peer” review if a service is denied.
  • Use key phrases like “I’d like to request a care plan meeting” or “Please help me understand the appeal process.”

With Family and Friends:

  • Educate your circle about your child’s diagnosis and needs, but set boundaries on what support looks like.
  • Create a short script or FAQ to help others understand how to help or what not to say.
  • Redirect unhelpful comments with “What we need right now is…” or “What’s most helpful is…”

In the Community:

  • Join rare disease awareness days or advocacy walks, even virtually because visibility matters.
  • Email local representatives about access issues, using your family’s experiences as a story with impact.
  • Offer to speak on a panel or write a blog for local nonprofits, hospitals, or advocacy groups.

With Yourself:

  • Track your wins. Celebrate every time you made a phone call, submitted paperwork, or spoke up.
  • Allow space for grief and growth. You’re doing hard, important work.
  • Be kind to your past self. You advocated the best you could with what you knew at the time.