Roanna Maharaj
Director
Roanna Maharaj is a 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, her lived experience drives an unwavering commitment to ensuring patient voices shape every aspect of care — from preventative medicine to potentially curative therapies.
Personal Connection:
Roanna's life with thalassaemia major has been marked by profound challenges. After a severe and extremely rare allergic reaction to blood transfusions — the very treatment keeping her alive — her case was referred to specialists worldwide. At her most critical, she required over 248 units of red blood cells in a single year. This experience transformed her into one of the most powerful patient voices in the rare disease community.
Professional Background:
Roanna holds Bachelor's and Master's degrees in Psychology, both earned with distinction. She has served on health and advisory committees at national and international levels, previously served as Vice Chair of the UK Thalassaemia Society, and has led public health, education, and patient advocacy initiatives across the rare disease field. Her contribution to the British Journal of Nursing reflects her commitment to improving clinical practice through patient insight.
Recognition:
Roanna's advocacy has earned her recognition from multiple prestigious bodies, including a Lifetime Achievement Award from the Mayor of Enfield in 2024. Her story has been featured by NHS Blood and Transplant and numerous medical organisations.
Role at HGVV:
Roanna founded Hidden Genes Visible Voices CIC to give those affected by rare genetic conditions a meaningful platform for advocacy and change. She champions patient-centred care, health equity for marginalised communities, and systemic reform — ensuring that those with lived experience actively shape policy, services, and the next generation of healthcare practice.
Contact:
Email: info@hgvv.org.uk
Delroy Jordon
Director
Delroy Jordan is a Director at Hidden Genes Visible Voices CIC, bringing invaluable lived experience and deep community expertise to the organisation.
Personal Connection:
Delroy has a long-standing personal and professional commitment to supporting older patients living with dementia and their families, understanding first-hand the real-world challenges they face.
Role at HGVV:
Drawing on his extensive work with communities and families, Delroy leads the identification and development of projects and activities that make a tangible difference to some of society's most vulnerable individuals — combining compassion with practical, impactful action.
Romaine Maharaj
Director
Romaine Maharaj is a strategic leader and advocate with over 40 years of experience spanning diplomatic relations, healthcare advocacy, and financial services.
Personal Connection:
Romaine's journey as an advocate began over 35 years ago when her daughter was diagnosed with thalassaemia major. This experience ignited a lifelong passion for championing patient rights, addressing health inequalities, and driving systemic change — particularly for marginalised communities whose needs have historically gone unaddressed.
Professional Background:
As Executive Director of the UK Thalassaemia Society (2018–2024), Romaine delivered exceptional stakeholder engagement across 2,000+ patients, families, NHS trusts, and pharmaceutical partners. Prior to this, she served as a Diplomat at the Trinidad & Tobago High Commission in London (2004–2018), and earlier held senior roles in financial services including Head of Mortgages at FINCOR/Republic Bank.
Role at HGVV:
As a Director, Romaine builds strategic partnerships with healthcare providers, public bodies, and community organisations. Her focus is on accessibility, inclusive service design, and ensuring the lived experience of diverse communities is embedded in policy and decision-making.
Contact:
Email: info@hgvv.org.uk | LinkedIn: romainemaharaj
Sam Budala
Director
Sam Budala is a Programme Manager in the financial services sector with 15 years of experience leading Finance and IT transformation.
Personal Connection:
Having lost family members to genetic conditions, Sam is deeply passionate about creating greater awareness, support, and change for affected individuals and families.
Role at HGVV:
Alongside a career defined by delivery and impact, Sam has been actively involved in volunteering, charity work, advisory support, and mentoring. As a Director of Hidden Genes Visible Voices, he brings a strong commitment to community engagement, fundraising, and advocacy — dedicated to helping the charity make a meaningful and lasting impact.
Creating Change Together
At Hidden Genes Visible Voices CIC, we champion awareness, visibility, and advocacy for rare genetic conditions. Join us in making a difference today.
About Hidden Genes Visible Voices CIC
Hidden Genes Visible Voices CIC is a community interest company dedicated to fostering awareness, understanding, and positive change around rare genetic conditions and their impact on individuals, families, and communities.
Established in the United Kingdom, our organisation operates as a not-for-profit, reinvesting all surpluses into projects that support our mission.
We champion inclusivity, visibility, and advocacy, giving a platform to those whose stories too often go unheard.
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Planned Projects
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Community Events
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Key Partners
Advocacy Initiatives
Engaging with policymakers to influence positive change for individuals with rare genetic conditions.
Support Programs
Providing essential resources and support to affected families and individuals.
Community Engagement
Building a network of support through community events and outreach.