Max Appeal

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Posted 20 hours ago by Claire Hennessey

Max Appeal is the UK registered charity supporting families affected by 22q11 Syndromes. The Consensus...

 Patient Groups /  UK / 2 views

Posted 2 days ago by Tony Thornburn

Herewith the link to Behçet’s syndrome/disease Medical Factsheets, prepared by our leading clinicians: https://behcets.org.uk/information-for-patients/behcets-medical-factsheets/ The...

 Factsheets /  UK / 5 views

Posted 2 weeks ago by Lucy McKay

Abstract:  The incidence of mental health disorders is significantly higher in individuals with a rare...

 Journals and Articles / 12 views

Posted 2 weeks ago by Lucy McKay

Abstract: Medical students automatically couple rare illnesses with biomedical minutiae. Upon meeting CS (pseudonym), a...

 Journals and Articles / 17 views

Posted 2 weeks ago by Lucy McKay

Abstract: Medical student training is largely focused on acquiring knowledge of diseases and their management,...

 Journals and Articles / 17 views

Posted 3 weeks ago by Lucy McKay

Abstract: Background Late and misdiagnoses of rare disease patients are common and often result in...

 Journals and Articles / 20 views

Posted 3 weeks ago by Lucy McKay

Abstract: This article presents an approach to "thinking genetically" in primary care. Busy practitioners often...

 Journals and Articles / 23 views

Posted 2 months ago by Jo McPherson

Neurofibromatosis type 1 (NF1) is a neurogenetic condition that approximately 1 in every 2,700 people...

 Learning Resources / 57 views

Posted 2 months ago by Jo McPherson

This toolkit sets out the latest thinking in EDS, including the new approaches to diagnosis...

 Rare Disease Guidelines / 52 views

Posted 2 months ago by Allan Muir

Based in the United Kingdom, we are a network of individuals, families, scientists, and healthcare...

 Patient Groups /  UK / 85 views

Posted 3 months ago by Helen Bedford-Gay

For a leaflet explaining the basic facts of FOP for patients and their family and...

 Factsheets / 60 views

Posted 3 months ago by Helen Bedford-Gay

FOP Friends is the UK's charity dedicated to supporting people who have been diagnosed with...

 Patient Groups /  UK / 89 views

Posted 3 months ago by Sarah Allard

The Gauchers Association provides support and advice to patients and their families, supports research, and...

 Patient Groups /  UK / 69 views

Posted 3 months ago by Tracy Lynch

We are the only charity and support group in the UK for individuals and families...

 Patient Groups /  UK / 78 views

Posted 3 months ago by Emily Cutting

Ataxia UK's updated and expanded Medical Guidelines were produced to help healthcare professionals in the...

 Rare Disease Guidelines /  London / 75 views

NAIT Babies

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Posted 4 months ago by danjeffries

Naitbabies are a UK registered patient organisation run by families with Fetal and neonatal alloimmune...

 Patient Groups /  UK / 135 views

Ataxia UK

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Posted 4 months ago by Emily Cutting

Ataxia is an umbrella term for a group of neurological disorders that affect balance, coordination...

 Patient Groups /  London / 120 views

Posted 4 months ago by Ian Legg

The UK registered charity supporting individuals with Noonan Syndrome and other related Rasopathies. We provide...

 Patient Groups /  UK / 121 views

Posted 5 months ago by Allison Watson

Ring20 Research and Support UK CIO support and connect families, individuals and professionals around the...

 Patient Groups /  East of England / 121 views

Beat SCAD

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Posted 5 months ago by Debbie Oliver

Beat SCAD is a patient-led charity that aims to support Spontaneous Coronary Artery Dissection (SCAD)...

 Patient Groups /  UK / 182 views

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