Information, Education, and Social Media Resources for Rare Disease:
Are you part of a collaborative group working in the area of rare diseases in Northern Ireland?
Queen’s University would welcome the opportunity to interview you (via telephone or in person) to evaluate awareness of rare diseases and the related information and educational resources available for patients, their families and healthcare professionals.
We are hoping to improve rare disease resources in Northern Ireland and would appreciate your help so that we can identify important priorities for local development. This may be creating new information or signposting local individuals to excellent resources that exist elsewhere.
We would love to hear from you. If you are interested in knowing more please contact Julie McMullan via email at firstname.lastname@example.org
Thank you for considering being part of this important research!