Rare Disease Advocacy
When the diagnosis is rare, the school system rarely knows what to do with it.
I've sat in your chair. I work with families navigating rare, complex, and under-recognized diagnoses — and I know how to make the school system meet your child where they are. Your child cannot wait for them to figure it out.
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Drake's story
My son taught me this work.
Drake was born premature. NICU. A TBR1 diagnosis — a single-gene mutation so rare that most school districts have never heard of it. Apraxia of speech. Sensory processing disorder. ADHD. Every IEP meeting felt like a translation job — explaining what TBR1 even is, fighting for the services the law already entitled him to, then walking out exhausted and starting over.
I did this for years before I did it for anyone else. Drake is the reason I know what your meeting feels like from your side of the table.
Path & credentials
What I've built since.
- Board member, TBR1 Foundation — supporting families worldwide navigating the same single-gene mutation.
- AGENDA program advocate — pushing for rare disease policy reform at the school district level.
- Rare Disease Alliance — speaking circuit and parent advocacy training.
- 20+ years working inside special education law — IEPs, 504s, FBAs, FERPA, eligibility, and everything that happens when the standard playbook doesn't fit.
Watch
Hear me explain what this work actually looks like.
Most parents don't know what they don't know — until they're sitting at a table with a school district that does. These short videos walk you through what I've learned advocating for children with rare diagnoses, and why generic advocacy doesn't work for complex kids.
Video 1 will explain why diagnosis-first advocacy matters for rare disease families.
Video 2 will explain how medical complexity becomes educational impact inside the IEP.
If you saw your child's story in either of these, let's talk.
Book Your Advocacy CallFind your child's diagnosis
Rare often means the list hasn't caught up yet.
These are conditions I have advocated for, or that I have direct experience and training with. If your child's condition isn't listed, reach out anyway.
Don't see your diagnosis? Reach out anyway — rare doesn't mean alone.
Book Your Advocacy CallGenetic / chromosomal
Single-gene mutations
Metabolic disorders
Neurological / seizure disorders
Autism spectrum + co-occurring
Speech & language
Sensory & motor
Medical complexity
Proof
I am one of a very small number of advocates working almost exclusively with rare diagnoses.
When you call me, you're not training me on your child's condition. You're not the only parent at your district who has ever asked for what you're asking for — even if it feels that way. I bring the specific procedural knowledge, the IEP language, and the network of specialists who can back up the recommendations I make in your child's meeting.
Possibility
Let me carry the legal weight. You stay the parent.
You shouldn't have to become an expert in special education law to get your child what they need. That's my job. Yours is to be at home, eating dinner, reading bedtime stories, holding the line on what your kid actually loves — not drafting IEP goals at midnight.
Book Your Advocacy CallSpecial Education Concierge prepared by Michelle Choairy