Patient Engagement Consultant, Ripple Effect Communications; Rare Disease Patient Advocate
Why Plain Language Summaries?
“Knowledge cannot be elitist – it needs to be accessible and understandable for all, leading to informed medical health choices and an improved quality of life.”
Sheila Khawaja has been a rare disease patient advocate since 2013 when she began her experience as the president of a grassroots pituitary organization in north-eastern Italy, joining the national board shortly thereafter. In 2016, she joined the international board of the World Alliance of Pituitary Organizations (WAPO), a global umbrella organization currently bringing together 37 national pituitary patient organizations around the globe. As the organization’s PR, her initial main purpose focused on raising awareness of the organization and, subsequently, discovering opportunities for the organization to make a difference for the community co-creating with a variety of stakeholders. In the past 4 years, Sheila has been a panellist, chaired sessions, as well as co-chairing workshops and co-leading the PFMD Patient Engagement Open Forum online session on the publication of lay summaries. Sheila is also an active member of the PFMD Strategic Advisory Board and has recently joined the Patient Engagement and Patient Engagement Data Project at PFMD (PE & PED). In 2020 she joined the Patient Advisory Board at Sage Publishing – Journal on Therapeutic Advances in Drug Safety to support and advise the journal’s editorial board on lay summaries and related topics. Professionally, Sheila is an Italian-to-English translator and an English as a Special Language Coach (ESP Coach) based in beautiful Italy.