Maria Hadjidemetriou
New York
Summary
As an accomplished and respected Patient Advocate and Expert Patient Advisor I have built relationships over two decades serving Rare Disease communities globally with NGO’s and Pharma Executives. This has given me the opportunity to work with leaders developing creative, and strategic initiatives. My ability to handle difficult and unexpected situations through problem-solving skills, powerful storytelling, empathy and a positive "can do" attitude delivers outcome with collaboration and trust.
Overview
17
17
years of professional experience
Work History
Expert Patient Advisor/Lead Patient Advocate
Maria Hadjidemetriou Consultant
New York
01.2008 - Current
- Serve as a knowledgeable resource to the Rare Disease/Thalassemia community by creating Thalassemia Mommies, a private Facebook group now comprising over 600 mothers globally.
- Consultant for Pharma and Biotech as an Expert Patient Advisor on clinical trials, being more patient-centric, as well as input on marketing and branding.
- Assist in the development of educational lectures for Pharma in relation to the patient journey in advocacy series.
- Serve as an invited speaker at annual Pharma events.
- Execute Statement of Work for vendors, defining the project scope and vision in patient advocacy; timeline, and goal.
- Cultivate relationships by managing the customer experience.
- Keep a contact report after every prospect of new vendor/pharma meeting.
- Solicit diverse patient advocates for Pharma board advisories, creating an inclusive board.
- Handle very confidential material/information on clinical trials for FDA approval. Discretion of utmost importance.
- Working with Abrasta (Thalassemia Society of Brazil) in creating first ever Zoom conference during pandemic with over 400 patients around the world; collaborated on conference agenda.
BoD; Expert Patient Advisor
Thalassemia International Federation, (TIF)
Nicosia
01.2013 - Current
- Created and manage official TIF Instagram account composing content, engage with followers in comments, grow followers, monitor activities and research health trends for Thalassemia/Sickle Cell Disease.
- Deliver speeches in various healthcare summits and medical conferences addressing Thalassemia, new novel therapies, patient partnership; patient rights; gene therapy; motivational living through healthy eating, exercising and creating an outstanding lifestyle.
- Invited by the World Health Organization to speak in Geneva at the 72nd World Health Alliance on Gene Therapy and at the United Nations on patients rights
- Invited to speak at the 2013 World Congress Thalassemia meeting in Abu Dhabi with a presentation on "Keeping a Positive Mind with Thalassemia".
- Presented in 2017 in Amman, Jordan holding multiple workshops for our young patients educating them how they can be patient advocates.
- Invited by Ministries of Health and Patient Organizations to Kuwait and Oman as Delegation Visit addressing patients needs; current treatments; giving best practices on maintaining optimal health with hematologists, cardiologists, nurses, Blood Bank Executives, and Ministries.
- Co-Founder of American Network for Haemoglobin Disorders, bridging genetic blood disorders in The Americas.
Education
Certificate in Life Science/Genetics -
Eurordis Academy
02.2021
Bachelor of Science in Marketing -
Fashion Institute Of Technology
06.1994
International Marketing -
Instituto Lorenzo De Medici
08.1993
Skills
- Business Development
- Strong Customer Service / Communication Skills / Listening Skills
- Marketing/Branding
- Positive Leadership Attitude
- Relationship Building
- Content Management
- Client Engagement
- Presentations and Public Speaking
- Managing Events Start to Finish
Features
- 2022 Maybelline Disability Model for Disability Pride Month a global campaign on Maybelline’s social media platforms.
- 2018 Family Flavours, a Middle Eastern lifestyle magazine featured a four-page story on my patient advocacy for International Women's Day.
- Published two articles for the peer-to-peer medical journal American Journal of Hematology in 2017 and 2019.
- Wrote and produced short documentary winning two film festival awards "Thalassemia: Life Without Boundaries" now being featured on the Rare Disease Channel. Documentary has also been translated in Arabic, Farsi and Russian.
Awards & Association
- 2016 Presidents Award for Outstanding Commitment to the Thalassemia Community given by the Cooley's Anemia Foundation.
- 2019 Patient Recognition Award by the Cooley's Anemia Foundation.
- 1998 to Present, Cooley's Anemia Foundation - Executive Board Member
Languages
Greek
Full Professional
Italian
Limited
Timeline
BoD; Expert Patient Advisor
Thalassemia International Federation, (TIF)
01.2013 - Current
Expert Patient Advisor/Lead Patient Advocate
Maria Hadjidemetriou Consultant
01.2008 - Current
Certificate in Life Science/Genetics -
Eurordis Academy
Bachelor of Science in Marketing -
Fashion Institute Of Technology
International Marketing -
Instituto Lorenzo De Medici
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