Katie Callaghan

RARE Youth Project Intern

RARE Youth Monologues

Sometimes we just need to stop and listen. Three young people will take to the stage to share their experiences of living with a rare condition in this unique spoken word performance. Followed by a chat facilitated by Dr Lucy McKay from Medics4RareDiseases.

Katie is 20 years old and a current RARE Youth Project Intern at Rare Youth Revolution. She is currently leading Rare Youth Revolutions Genetics and Relationships Project. Living with multiple rare diseases herself (Ehlers-Danlos Syndrome and Chronic Intestinal Pseudo Obstruction), Katie finds great joy in advocating for others with rare disease. She has worked with multiple forums to help give the young person’s point of view and is particularly passionate about healthcare transition. This RAREfest, Katie will be helping with Rare Youth Revolution’s interactive session as exhibitors and will be speaking in the ‘Rare Youth Monologues’ live session.

My three wishes for the future of rare disease are:

  • For young people and our voices to be heard
  • For doctors to understand and listen to the patient
  • For there to be a national policy for healthcare transition for those living with complex and rare diseases.