Sheila Khawaja is 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, discover opportunities where the organization could 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 to 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 the Journal on Therapeutic Advances in Drug Safety (SAGE publishing) 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.
Organizations
WAPO believes that the strength of a global network of national pituitary patient organizations will lead to improved diagnosis, treatment and care for pituitary and adrenal patients worldwide.The World Alliance of Pituitary Organizations (WAPO) is a self-governed non-profit organization created in order to unite the international pituitary patient community to push for optimal treatment and care for all patients with pituitary and related conditions worldwide. The goal of our organization is to share information, work together and support all pituitary patients’ advocates all around the world.
Badges
Initiatives (6)
How-To Guide On Patient Engagement in the Development of a Clinical Outcome Assessments (COA) Strategy
Plain language summaries (PLS) of peer-reviewed publications and conference presentations: practical ‘How-To’ Guide for multi-stakeholder co-creation
Patient engagement in co-creation of Patient Information Leaflets and other patient facing material.
Events (1)
20
22
16th Annual Meeting of ISMPP
Resources (6)
Working Group Updates 2020
11 Mar 2020 Framework/guidance
The Patient Engagement Guide
20 Jul 2020 Framework/guidance
Infographic of Patient Engagement Multi-Stakeholder Contributors' Network
04 Mar 2021 Fact sheet
Commitments (3)
Patient engagment advisor | co-creator | catalyser
When I listen, I will make sure to understand the holistic aspect of each patient's journey and their respective family and friends. Hearing a sound is not the same as listening to a voice.
Work in progress
Patient engagment advisor | co-creator | catalyser
I will ensure that patients who have spoken also have an opportunity to speak their minds and put forward ideas and potential solutions for the community. I will offer my support to connect them with the right people or create teams so their ideas can be developed.
Work in progress
Patient engagment advisor | co-creator | catalyser
Transparency is the key to any relationship and this is even more crucial when it comes to our health, treatment options and understanding the complexity of stakeholder relations. I will ensure, to the best of my capabilities, to share as much information and give a voice to those patients who are unable to speak out.
Work in progress