Diagnosis
You may find this section useful if you (or someone you care about) has recently received a diagnosis. Or perhaps you or they have had a diagnosis for some time, but are now beginning to think more about it.
You may also be waiting for results, searching for a diagnosis, or have been told you might never get one.
Looking for a diagnosis
Waiting for results, deciding on genetic testing, managing uncertainty
Early days
Receiving a diagnosis, reimagining the future, pacing yourself
Living with a rare condition
Rare challenges, ‘expert by experience’, living as well as possible
You & your emotions
Acknowledging your feelings, how to manage them, finding hope.