Rett Syndrome SupportRett Syndrome Support
Practical family resources

Help for the next step.

Reliable starting points for diagnosis, appointments, hospital visits, communication, adult care, research and finding support.

Important: This hub provides general information, not diagnosis, treatment or emergency advice. Use your local emergency service for urgent help and agree individual plans with qualified clinicians who know the person.
Rett Syndrome Support
Rett Syndrome SupportSeizure event record · Parent and caregiver form

Seizure event record

Complete any useful fields after a seizure, then print or save the completed page. Every field is optional and nothing entered here is sent to or stored by this website.

Person and event details

Timing and usual pattern

Before the seizure

During the seizure

Care and action taken

Recovery and follow-up

Download the fillable PDF

Privacy and safety: Information entered on this page stays in the visitor’s browser and is cleared when the page is closed or refreshed. This record supports communication with the healthcare team and does not replace an individual seizure action plan, professional medical advice or emergency services.

Rett Syndrome Support
Rett Syndrome SupportIndividual seizure emergency plan · Must be completed with the treating clinician

Seizure emergency plan

This blank template must be completed, checked and signed by the person’s qualified clinician. It does not provide medicine doses or replace local emergency guidance.

Safety: Do not use this unsigned blank form as an active treatment plan. Medicine, dose, timing and escalation instructions must come from the treating clinical team.

Rett Syndrome Support
Rett Syndrome SupportHealth pattern tracker · Bring completed records to appointments

Health tracking pack

Choose the observations that matter for the current concern. This record supports—not replaces—clinical assessment.

Date/timeSeizure or episodeSleepBowel/refluxPain or changeFood/fluid

For urgent symptoms or a person who appears seriously unwell, use local urgent or emergency services rather than waiting to complete a tracker.

Rett Syndrome Support
Rett Syndrome SupportPersonal school information · Review with family, school and relevant professionals

School information pack

Record the individual information staff need to support communication, participation, health, safety and dignity.

Use alongside the school’s official medical, medication, safeguarding, moving-and-handling and emergency procedures. Ask the relevant clinicians and therapists to review specialist instructions.

Newly diagnosed

There is no single perfect order. Start with the needs that are most important now and build a coordinated team over time.

1. Confirm your contactsKeep the details of the clinician who explained the diagnosis and ask who will coordinate ongoing care.
2. Keep your records togetherSave clinic letters, genetic results, medicine lists, therapy reports and emergency plans in one accessible place.
3. Ask about the care teamDepending on individual needs, this may involve primary care, neurology, gastroenterology, cardiology, orthopaedics, respiratory care, therapies, nutrition and communication specialists.
4. Find Rett expertiseUse the worldwide directory to locate a dedicated clinic, Rett-experienced service or national referral organisation.
5. Prepare questionsAsk what requires attention now, what monitoring is recommended, who to contact between appointments and which changes should prompt urgent assessment.
6. Find family supportPeer support can help with everyday experience, but treatment decisions should remain with the clinical team.

Find centres and organisations

Care-team information is based on the IRSF managing Rett care resources and the published consensus guidelines across the lifespan.
Rett Syndrome Support
Rett Syndrome SupportPersonal hospital information · Complete with the clinical team

Hospital information sheet

Complete this with the person’s clinical team, keep it updated and bring it to planned or emergency visits. Do not include information you do not want printed.

This is an organisational template, not a clinical care plan. Ask the person’s clinicians to review important medical and emergency information.

Rett Syndrome Support
Rett Syndrome SupportAppointment preparation checklist

Appointment checklist

Tick the subjects you want to discuss. Bring recent reports, current medicines and notes about changes since the previous visit.

For clinical monitoring, use the person’s individual plan and the IRSF comprehensive care and quick-reference resources.
Rett Syndrome Support
Rett Syndrome SupportMy communication passport

Communication passport

Complete this with the person and their speech, language or AAC professionals. Keep it available for school, care, appointments and hospital visits.

IRSF describes its Rett Syndrome Communication Guidelines as a global best-practice resource. See the International Rett Syndrome Foundation for current communication resources and professional programmes.

Adults with Rett syndrome

Transition planning should start before paediatric services end and should preserve knowledge of the individual—not merely transfer a diagnosis.

Adult clinical leadIdentify who will coordinate routine health care and how specialist advice will be accessed.
Transfer summaryPrepare diagnoses, medicines, monitoring, equipment, communication and emergency information.
Decision supportClarify consent, supported decision-making, advocacy and any relevant local legal arrangements.
Daily lifePlan meaningful activity, education, day support, respite, transport, housing and social connection.
Equipment and therapyCheck who will maintain mobility, seating, communication and other essential equipment after transition.
Future family planningRecord wishes, routines and trusted contacts, and discuss sustainable care as family circumstances change.
The consensus guidance emphasises that multisystem needs continue across the lifespan and require coordinated primary and specialist care. Read the published consensus overview.

Research and clinical trials

Research can offer new knowledge and possible opportunities, but every study is different. Check current details with the official registry and study team before making decisions.

Check the study statusConfirm whether the study is recruiting, where it is taking place and whether the registry entry has recently been updated.
Ask about eligibilityAge, diagnosis, genetic result, medicines, health history and previous trial participation may all affect eligibility.
Understand participationAsk about visits, tests, travel, time commitments, possible benefits, burdens, risks and which costs are covered.
Discuss it with the care teamA clinician who knows the person can help you consider how participation may affect normal care and medicines.

ClinicalTrials.govOfficial US registry with international studiesRett Syndrome Research TrustInternational Rett research organisationInternational Rett Syndrome FoundationCare, research and family resourcesWorldwide directoryClinics, specialist services and referral organisations
A listing or external link is not an endorsement and does not mean a study is appropriate or currently recruiting.
Rett Syndrome Support
Rett Syndrome SupportResearch and clinical-trial questions

Research and clinical trials

Use this worksheet when speaking with a study team. Study status, locations and eligibility can change; verify details with the official registry and investigators.

Support in your country

Healthcare pathways, disability support, education rights, equipment funding and carer services differ by country. Begin with a verified national Rett organisation or specialist centre, then check current information with the responsible government or health service.

Browse countries and contacts