Resources · People who are not us

The organisations that were here before us.

Charities, registries and parent networks that support people with these conditions — most of them for decades. We are not affiliated with any of them, we receive nothing for listing them, and several will help you in ways a website cannot.

If you need help now

This page is not the right place for an emergency

If symptoms are severe, sudden, or getting worse quickly, contact your care team, an urgent care line, or emergency services. Do not wait for a charity helpline to open, and do not let anything on this site delay care.

What counts as urgent →

Chiari malformation

4 organisations Our guides on this →
Patient charity · US Conquer Chiari Patient education, research funding, and a directory of clinicians who see Chiari often enough to be useful. Best for finding a specialist
Patient charity · US Bobby Jones Chiari & Syringomyelia Foundation Support networks, listed centres of excellence, and an annual patient conference. Best for meeting other patients
Patient charity · US American Syringomyelia & Chiari Alliance Project Focused on people living with a syrinx alongside Chiari, which many general resources skip. Best for syrinx-specific questions
Patient charity · UK Ann Conroy Trust UK support for Chiari and syringomyelia, including regional meet-ups and a helpline. Best for UK patients

Hydrocephalus

4 organisations Our guides on this →
Patient charity · US Hydrocephalus Association The largest patient-led funder of hydrocephalus research, plus community programmes across the lifespan. Best all-round starting point
Patient charity · UK Shine Charity Support for hydrocephalus and spina bifida from birth through adult transition, including benefits advice. Best for practical and welfare help
Umbrella body · International International Federation for Spina Bifida and Hydrocephalus Network of national member organisations — the route to a group in your own country and language. Best outside the UK and US
Patient charity · Canada Hydrocephalus Canada Programmes for children, adults and caregivers, with a focus on transition to adult care. Best for Canadian families

Craniosynostosis

4 organisations Our guides on this →
Patient charity · UK Headlines Craniofacial Support UK-wide parent-to-parent contact, regional groups, and information written by families who have been through it. Best for UK parents
Family support · US Cranio Care Bears Care packages and practical support for families around the time of cranial surgery. Best for the surgery itself
Patient charity · US Children's Craniofacial Association Family networks, education, and annual retreats that bring affected families together. Best for long-term community
Patient charity · US FACES: The National Craniofacial Association Financial assistance for travel and lodging when treatment is far from home. Best for travel costs

Glioma and brain tumours

4 organisations Our guides on this →
Patient charity · US National Brain Tumor Society Research funding, trial navigation, and advocacy on access to treatment. Best for trial navigation
Patient charity · UK The Brain Tumour Charity Information, a support line staffed by nurses, and clinical trial signposting. Best for talking to a person
Patient charity · US American Brain Tumor Association Condition education, care navigation, and peer support communities by tumour type. Best for tumour-type communities
Patient charity · US Musella Foundation Brain tumour trial database and copay assistance for people facing treatment costs. Best for financial assistance

Encephalocele and rare conditions

4 organisations Our guides on this →
Rare disease body · US NORD — National Organization for Rare Disorders Condition summaries, expert referral, and assistance programmes across thousands of rare diagnoses. Best when no specific charity exists
Research charity · US Birth Defect Research for Children Parent-matching service and a registry for rare congenital conditions. Best for finding another family
Rare disease body · International Global Genes Toolkits for families navigating a new rare diagnosis, including how to organise records. Best in the first weeks
Umbrella body · Europe EURORDIS European rare disease alliance — route into national patient organisations and EU reference networks. Best for European families

How an organisation gets on this list

  • It is led by, or accountable to, the people who have the condition — not a marketing arm of a treatment provider.
  • It offers something this site cannot: a person to talk to, money for travel, another family who has been through it, or a route into care.
  • It does not require payment for basic information, and does not sell the data of people who contact it.
  • We have no financial relationship with it, and it has not paid to be here. If that ever changes, it will be stated on the entry.
Missing someone?

Especially outside the UK and US — this list is unbalanced and we know it. Tell us who helped you.

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