Rare Disease Network
Medical Strategy & Education
We were working on an extremely rare haematological condition, that if left untreated, has a high rate in mortality. With most doctors never seeing a patient with this condition, HCP knowledge and understanding was low, meaning patients were frequently misdiagnosed and left untreated.
Our client wanted to improve the knowledge of this rare disease within the scientific community. Focus was given in the screening and management of this condition to help improve diagnosis and patient survival.
After finding over 20 haematologists with a special interest in this area, we created a professional development programme for them and their colleagues. Hosted within specialist centres, this CME accredited course consisted of both lectured-based and simulation learning, educating doctors on patient pathways, as well as giving them hands-on experience through clinical scenario recreation.
Finally, we created a sustainable network of physicians that provided continued screening, diagnosis and treatment for patients with this rare disease beyond the programme.
13 new diagnoses were made in the first six months
129 further diagnoses were made through laboratory auditing
This network is now a not-for-profit educational and research organisation