Our RAREresources have been created alongside rare disease families.
The short information sheets found in the links below can help answer questions you may have at whatever stage you are at in your diagnostic journey.
Understanding Rare Disease
e.g: what is a Rare Disease?, what to expect in a Genetics appointment.
Living with a Rare Disease
e.g: home adaptations, dentistry, benefits, power of attorney.
Adapting to a Rare Disease Diagnosis
e.g: telling people, coping, mental wellbeing.
Palliative Issues and Bereavement
e.g: DNR, bereavement of a child
