Roanna Maharaj
Director

Roanna Maharaj is a seasoned patient advocate, researcher, and thought leader who has dedicated her life to transforming healthcare for individuals living with rare genetic conditions. Born with beta thalassaemia major, Roanna's personal journey has been one of extraordinary resilience and has fuelled her commitment to ensuring that patient voices are central to every aspect of care, from preventative medicine to potentially curative therapies.

A Journey of Resilience

Roanna's life with thalassaemia major has been marked by both profound challenges and remarkable achievements. Having required blood transfusions throughout her life to manage her condition, she faced a life-threatening crisis shortly after her 22nd birthday when she developed a severe and extremely rare allergic reaction to blood transfusions, the very treatment keeping her alive. Her case baffled even leading thalassaemia experts in the UK and was referred to specialists worldwide.

During this critical period, Roanna's blood requirements became the highest for any thalassaemia patient in the UK, requiring over 248 units of red blood cells in one year, nearly 250 people's donations over two years. The severity of her condition left her virtually housebound, requiring a Zimmer frame to walk indoors, and facing daily struggles with exhaustion and pain that made even basic tasks like showering or eating extraordinarily difficult. Through years of uncertainty and international medical consultations, Roanna not only survived but emerged as a powerful voice for change in healthcare.

Academic Excellence and Research Leadership

Roanna holds Bachelor's and Master's degrees in Psychology, both earned with distinction. At just 21 years old, she commenced her PhD and doctorate research, becoming one of the youngest patients to be offered such a scholarship based on her outstanding achievements. Although medical challenges temporarily interrupted her formal studies, Roanna has channelled her academic training into groundbreaking patient advocacy and research.

Transforming Patient Advocacy

Roanna previously served as the Vice Chair of the UK Thalassaemia Society and led transformative initiatives in Public Health, Education, and Patient Advocacy. Despite or perhaps because of the medical challenges she has faced, she has volunteered full-time with UKTS for over six years, representing the charity at major national and international events and taking responsibility for most of the organization's medical and scientific submissions.

Roanna serves on health and advisory committees and boards at both national and international levels, bringing the patient perspective to policy discussions and clinical guideline development. Her advocacy work is driven by a fundamental belief: that patients must be active participants in managing their health and that the patient-healthcare professional relationship must be strengthened through better communication and understanding.

Champion for Health Equity

Roanna is deeply passionate about addressing health inequities facing the thalassaemia and rare disease community. She has dedicated her life to empowering and educating patients and families around the world, developing innovative tools that enhance communication between patients and healthcare professionals. Her work particularly focuses on ensuring that marginalized communities—who often face the greatest barriers to care—receive equitable access to treatment and support.

Through her lived experience, Roanna has become an expert in the complexities of adherence, iron overload management, and the psychological and emotional impacts of living with a chronic condition. She uses this expertise to advocate for holistic, patient-centred care that addresses not just the medical aspects of rare diseases, but also the quality of life challenges that patients face daily.

Recognition and Impact

Roanna's selfless advocacy work has earned her recognition from multiple prestigious bodies. She has received several accolades from the Mayor of Enfield, including a Lifetime Achievement Award in 2024, in recognition of her outstanding contribution to thalassaemia advocacy and her tireless work supporting patients and families. Her dedication has been honoured by other prominent organizations who have acknowledged her transformative impact on patient care and health equity.

Her story has been featured by NHS Blood and Transplant and numerous medical organizations, inspiring others to become blood donors and raising awareness about the critical need for diverse donor populations.

Roanna's recent contribution to the British Journal of Nursing further demonstrates her commitment to improving clinical practice and ensuring that healthcare professionals understand the patient experience from the inside out.

Vision for Hidden Genes Visible Voices CIC

At Hidden Genes Visible Voices CIC, Roanna brings her unique combination of lived experience, academic rigor, and advocacy expertise to champion visibility and positive change for individuals with rare genetic conditions. Her leadership focuses on:

• Ensuring patient voices are embedded throughout the continuum of care
• Developing educational resources and tools that empower patients and families
• Addressing systemic health inequities affecting rare disease communities
• Building bridges between patients, healthcare professionals, and policymakers
• Creating innovative communication tools that strengthen the patient-provider relationship

Personal Philosophy

Roanna believes passionately that patients are not passive recipients of care but active partners in their health journey. Her advocacy is rooted in the understanding that true healthcare transformation happens when those with lived experience are given a platform to influence policy, shape services, and educate the next generation of healthcare professionals.

Despite the extraordinary medical challenges she has faced, and continues to face, Roanna's work is characterized by hope, determination, and an unwavering commitment to creating a healthcare system that works for everyone, especially those whose voices have historically been marginalized or ignored.

Contact:
Email: info@hgvv.org.uk

Note: Roanna's journey has been featured in patient stories on ukts.org and she has contributed to nursing education through her work with various publications.