Join us for an insightful conversation with Maya Zlatanova, CEO and Co-founder of FindMeCure and TrialHub, as we discuss patient-aligned clinical trials that consider both scientific rigour and patient needs.

Maya is a health-tech entrepreneur and pharma industry speaker with over 15 years of experience in feasibility, operations, and patient recruitment and engagement. Guided by her strong sense of empathy and love of storytelling, Maya champions patient-aligned trial design and is passionate about improving the way clinical research is conducted.

This episode highlights the barriers patients face in accessing trials, the importance of awareness and education, and the benefits of improving clinical trial design to enhance patient experiences.

Resources and abbreviations mentioned:

• UK Clinical Trials Gateway
• FindMeCure
• TrialHub
• EUPATI - European Patients Academy on Therapeutic Innovation
• Maya's publication on a statistical model for quantifying patient experiences
• Clarinda's publication on patient journeys

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Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com

Join us for this special (unedited) recording of Not Just Patients, which was streamed LIVE on LinkedIn!

To celebrate our 10th episode, we were joined by two incredibly inspiring advocates, Danielle Drachmann and Sumaira Ahmed. Listen to this uplifting, raw, and real conversation as these two amazing women share how they turned their adversity into advocacy, and the unspoken realities of their deeply personal work.

About our guests:

Danielle Drachmann is a recipient of the 2022 Young Patient Advocate Award at the Black Pearl Awards, and Executive Director at Ketotic Hypoglycemia International. As a rare disease patient and mother of three children with a rare disease, she is deeply passionate about patient engagement, partnering, citizen science, and patient-driven research. At Evidera, part of Thermo Fisher Scientific, Danielle specialises in fostering multi-stakeholder relationships and advancing patient-centred research. Additionally, she contributes to various health committees and has helped shape Europe's rare disease policy through her work with EURORDIS.

Sumaira Ahmed was diagnosed with seronegative neuromyelitis optica spectrum disorder (NMOSD) in the summer of 2014, after experiencing sudden and severe vision loss and weakness/numbness. Less than two months after her diagnosis, she founded The Sumaira Foundation (TSF) dedicated to generating global awareness of NMOSD, MOGAD and other rare neuroimmune conditions, building communities of support for patients and their loved ones, supporting research and advocating on behalf of patients. Sumaira currently serves as the Executive Director of The Sumaira Foundation.

Have feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com

Join us for a compelling conversation with Professor Lara Bloom, President and CEO of the Ehlers-Danlos Society. A strong patient advocate, Lara has a passion for pushing boundaries and fighting for progression DE&I in healthcare and LGBTQIA+ rights.

Throughout our discussion, we dissect the complex relationship between health equity and inclusion on a global scale. The episode also explores the transformative power of patient engagement in achieving health equity, emphasising the importance of true representation and inclusion.

Chapters
00:00:00 - Introductions
00:01:20 - Lara's journey into advocacy
00:04:16 - State of DEI in healthcare
00:10:45 - Challenges viewed through a global lens
00:15:00 - Interplay between health equity and diversity & inclusion
00:17:40 - Understanding diverse communities and minorities
00:24:05 - Need for better representation in healthcare
00:29:09 - Evolution of DEI in healthcare
00:35:13 - Initiatives working to further DEI in healthcare
00:37:18 - Understanding privilege in the context of healthcare
00:40:42 - Mindset for overcoming challenges
00:44:03 - Future and advice for healthcare stakeholders
00:47:00 - Advice for patients and patient advocates
00:48:56 - Power of patient organisations
00:54:53 - Reflections with Caitlin and Clarinda

Resources and abbreviations

• Ehlers-Danlos Support Group (EDS UK)
• EDS - Ehlers-Danlos Society
• EDNF - Ehlers-Danlos National Foundation, US
• HSD – hypermobility spectrum disorders
• DEI - diversity, equity, and inclusion
• NHS - National Health Service, UK
• Global Genes conference
• CF – cystic fibrosis
• ESG – environmental, social, and governance
• World Health Assembly
• Global Patient Movement Catalyst
• EDS Road to 2026
• World Health Summit

Have feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com