Posted 2 weeks ago by Jo Higgs

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

 Learning Resources / 14 views

Posted 2 weeks ago by Jo Higgs

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

 Rare Disease Guidelines / 12 views

Posted 3 weeks ago by Allan Muir

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

 Patient Groups /  UK / 32 views

Posted 1 month ago by Helen Bedford-Gay

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

 Factsheets / 37 views

Posted 1 month ago by Helen Bedford-Gay

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

 Patient Groups /  UK / 38 views

Posted 2 months ago by Sarah Allard

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

 Patient Groups /  UK / 36 views

Posted 2 months ago by Tracy Lynch

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

 Patient Groups /  UK / 44 views

Posted 2 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 / 48 views

Posted 2 months ago by danjeffries

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

 Patient Groups /  UK / 79 views

Posted 3 months ago by Emily Cutting

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

 Patient Groups /  London / 75 views

Posted 3 months ago by Ian Legg

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

 Patient Groups /  UK / 77 views

Posted 4 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 / 81 views

Posted 4 months ago by Debbie Oliver

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

 Patient Groups /  UK / 95 views

DDX3X Support UK

Popular 

Posted 4 months ago by Maria Poole

DDX3X Support UK is a UK based information and support group for patients and families...

 Patient Groups /  UK / 106 views

Posted 5 months ago by Lucy McKay

A great venue in central London to deliver an event, conference or meeting. Also the...

 Venues /  London / 93 views

Posted 5 months ago by Lucy McKay

Sarah Lippett is an author and artist who uses her illustrations to tell the story...

 Speakers /  London / 118 views

Posted 5 months ago by Lucy McKay

Childhood Tumour Trust (CTT) is a growing charity whose aim is to provide support for...

 Patient Groups /  UK / 87 views

Findacure

Popular 

Posted 5 months ago by Lucy McKay

Findacure is a UK charity that is helping the rare disease community to drive research...

 Patient Groups /  East of England / 135 views

Posted 5 months ago by danjeffries

The Royal Society of Medicine (RSM) is a leading provider of high-quality continuing postgraduate education...

 Medical Institutions /  London / 113 views

Posted 5 months ago by danjeffries

Dan Jeffries is an incredibly funny and relatable speaker. His talk takes you through his...

 Speakers /  South West / 136 views