Lasting Impressions Coffee NF Research & Advocacy Hub

Self-Advocacy

Take the next step when something is not working.

Self-advocacy can mean asking for a clearer answer, requesting needed care, documenting a concern, or challenging an access barrier. You do not have to know every rule or handle every step alone.

Pediatric to adult care

Transitioning to Adult Care

Health care transition is a gradual process of planning, transferring care, and becoming established in adult-centered care. The timing and team will differ from person to person, so begin early enough to reduce the chance of a gap in care.

Questions and actionsBegin the conversation
  • Ask when pediatric care ends and when transition planning begins.
  • Identify which current providers can continue seeing you as an adult.
  • Ask whether the pediatric team recommends an adult NF clinic or other adult providers.
  • Check whether insurance, referrals, authorizations, or consent rules will change.
Questions to ask
  • At what age does pediatric care end here, and what must be completed before then?
  • Which responsibilities can I begin practicing now, and where will I still need support?
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Transition summary · 2 pages

NF Transition Summary

Organize current NF care, monitoring, treatment history, medications, results, care-team contacts, open plans, and the records needed for the first adult visit.

Download transition summary

Transition checklist · 2 pages

Pediatric-to-Adult Care Transition Checklist

Track the handoff, records, prescriptions, referrals, authorizations, appointments, care coordination, and remaining responsibilities.

Download transition checklist

Practical preparation

Prepare for Your Appointment

Organize your health history, describe new concerns, plan your questions, and keep track of what happens next. The fillable forms can be completed digitally or printed.

Tool 1Start here

Important Appointment Reminders

Use a fillable checklist to keep essential items, records, questions, and contact details together.

  • Photo ID and insurance information
  • Provider, pharmacy, and emergency contact details
  • Medical history, imaging, symptoms, and priority questions
  • Follow-up, results, and care-coordination reminders
Download this form
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Practical next steps

Advocacy Steps & Tracker

Use these steps to describe a concern, leave with a clear plan, follow up, respond to a denial, and keep a simple record of what happens next.

Make the Concern Hard to Miss

  • Lead with the change: when it began, whether it is worsening, and what is different from your usual NF symptoms.
  • Give two or three concrete examples of what it now prevents or makes harder, such as sleeping, walking, hearing, working, or eating.
  • Bring dates, measurements, photos, or a symptom log when they show a pattern that may not be visible during the visit.
  • End with one direct request: evaluation, imaging, a referral, symptom treatment, or an explanation of why it is not recommended.

Try: “Since [date], I have had [change]. It now affects [daily activity]. I am asking for [specific next step].”

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Tips for Sharing Your Story

Your story belongs to you. Share it in a way that feels right.

Personal stories can build understanding, reduce isolation, and show why better research, care, and support matter. You decide what to say, who may hear it, and what remains private.

Know why you are sharing

Choose one main purpose: helping someone feel less alone, explaining an NF challenge, raising awareness, supporting advocacy, or inviting action.

Ask yourself: What do I want someone to understand, feel, or do after hearing this?

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