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Welcome to The Society for Inherited and Severe Blood Disorders of Trinidad and Tobago.
The Society for Inherited and Severe Blood Disorders of Trinidad and Tobago (SISBDTT) was established in 1983 by the late Dr. Waveney Patricia Charles, a pioneering haematologist and tireless advocate for individuals living with inherited blood disorders (IBDs). Originally established to assist individuals with Thalassemia, the Society expanded its scope in 1986 to include Sickle Cell Disease and Hemophilia, recognising the need for a united voice and comprehensive support system for all persons affected by these life-altering conditions.
From its early beginnings, SISBDTT has grown into the leading patient advocacy organisation for inherited blood disorders in Trinidad and Tobago. For over four decades, the Society has worked to enhance the quality of life for patients and their families through education, psychological and emotional support, and increased access to medical care.
SISBDTT provides a wide range of services, including screening and counselling, monthly support meetings, and educational sessions facilitated by medical experts. These initiatives not only empower patients with knowledge but also foster a strong sense of community, where individuals and families can find solidarity, care, and hope.
Over the years, the Society has been instrumental in advocating for access to life-saving medications, iron chelation therapy, and priority blood transfusion services. Through meaningful partnerships with the Ministry of Health and various corporate sponsors, SISBDTT has led numerous public awareness campaigns tied to World Thalassemia Day, World Sickle Cell Day, and World Blood Donor Day, promoting voluntary blood donation and greater public understanding of IBDs.
One of SISBDTT’s most critical advocacy areas is the promotion of newborn screening for inherited blood disorders. Early diagnosis can drastically improve treatment outcomes and reduce long-term complications. The Society continues to lobby for a national newborn screening program, ensuring that every child born in Trinidad and Tobago has a fighting chance at a healthier life.
Now headquartered at 74 Pembroke Street, Port of Spain, the Society is energised by a new generation of members who are passionate about carrying forward the legacy of Dr. Charles. Together, they are committed to driving forward awareness, support, and systemic change for all affected by inherited blood disorders in Trinidad and Tobago.
We are a:
- Registered Charitable Organization of Trinidad & Tobago
- Registered Non-Governmental Organization(NGO)
- Founding and voting member of the Thalassemia International Federation (TIF)
- Voting member of the World Federation of Hemophilia(WFH)
- Voting member of the Global Association of Sickle Cell Disease Organizations (GASCDO)
BENEFITS AS A MEMBER OF THE SISBDTT
- Invitation to monthly meetings which serve as a forum for members to raise issues they are facing in order to receive advice/support and intervention where possible
- Interfacing with a community of people who share similar experiences
- Improved well-being (members make informed decisions regarding their treatment).
- Regular updates about activities the SISBDTT is undertaking
- Members can become involved in the governance and decision-making of the SISBDTT
- Patients benefit from our international affiliate organizations by:
- Knowledge about the latest treatment options available.
- Access to technical expertise
Vision
A world where people with inherited blood disorders have sustained access to the best possible care and treatment to live a holistic life and function at their optimal level.
Mission
To improve the quality of life and empower persons affected by inherited bleeding disorders, sickle cell, and thalassemia through education, advocacy and support.
Testimonials
What Our Clients Say
Team members
Meet Our Leadership
Shenelle Maharaj
– Vice President, Thalassemia
Shenelle Maharaj is the Vice President for Thalassemia at the Society for Inherited and Severe Blood Disorders of Trinidad and Tobago (SISBDTT). A dedicated advocate and administrative professional with over 10 years of experience, she currently serves within the Government of the Republic of Trinidad and Tobago and holds a Bachelor of Business Administration from the University of New Brunswick.
As someone living with an inherited blood disorder, Shenelle brings both personal insight and professional commitment to her role. She has previously served as Assistant Secretary and Secretary on the SISBDTT Board and has actively represented the IBD community at national and international levels. Her advocacy includes media appearances, public education efforts, and participation in awareness events aimed at improving lives and increasing understanding.
Shenelle is passionate about making a difference and empowering others. Outside of her advocacy, she enjoys exploring nature, trying new restaurants, and spending time with family and friends.
Arnold John
– Vice President, Hemophilia
Arnold John is the Vice President for Hemophilia at the Society for Inherited and Severe Blood Disorders of Trinidad and Tobago (SISBDTT) and a long-standing advocate for the IBD community. Hailing from Marac Village, Moruga, Arnold has been actively involved with the Society for over 15 years, bringing a strong voice from rural Trinidad to the national conversation on blood disorders.
Diagnosed with Hemophilia at just nine months old, Arnold’s journey has been shaped by resilience and courage. At age seven, he developed meningitis, and a spinal procedure performed without the required Factor VIII treatment led to partial paralysis from the waist down. Despite this life-altering experience, Arnold has remained steadfast in his commitment to advocacy.
He previously served as Committee Chairperson for two consecutive terms, demonstrating strong leadership and unwavering dedication to SISBDTT’s mission. Since assuming the role of Vice President in January 2024, Arnold continues to champion the rights, needs, and visibility of persons living with inherited and severe blood disorders across Trinidad and Tobago.
Kieron Blackman
– Vice President, Sickle Cell
Kieron Blackman is a dedicated sickle cell warrior who has turned his personal journey with disability into a lifelong mission to advocate for better healthcare and support for individuals with inherited blood disorders (IBDs). As Vice President of SISBDTT, he champions increased voluntary blood donation, newborn screening, and greater public awareness of sickle cell disease and other IBDs.
With over 20 years of experience as a communications professional and an MBA in Marketing, Kieron leverages his expertise to drive impactful advocacy and outreach initiatives. He firmly believes that understanding your own condition is critical to navigating life with an IBD, and that self-care is the best care. His unwavering passion for patient rights and healthcare equity continues to inspire change, ensuring that no one living with an inherited blood disorder is left behind.
Sherry-Ann Solomon
– Secretary
Sherry-Ann Solomon is an educator, advocate, and dedicated caregiver to her son living with haemophilia. Her passion for improving the lives of individuals with inherited blood disorders (IBDs) has driven her active involvement in the Society for Inherited Blood Disorders of Trinidad and Tobago (SISBDTT).
As a committed member of SISBDTT, Sherry-Ann has played a key leadership role in organizing major awareness events. She co-chaired the World Hemophilia Day activities in 2023 and 2024, as well as the Walkathon 2024, helping to amplify the
voices of those living with IBDs. She is also a member of the Blood Drive Committee, working to promote voluntary blood donation, which is critical for individuals with bleeding disorders.
Beyond her local efforts, Sherry-Ann is an active volunteer for the Twinning Programme with the Canadian Hemophilia Society, fostering international collaboration to improve hemophilia care in Trinidad and Tobago.
A Tribute to Dr. Waveney Patricia Charles
With profound respect, enduring gratitude, and heartfelt love, the Society for Inherited and Severe Blood Disorders of Trinidad and Tobago (SISBDTT) pays tribute to our founder, mentor, and guiding light—Dr. Waveney Patricia Charles.
Dr. Charles was not only a distinguished hematologist, but a visionary and compassionate leader who changed the course of care for individuals affected by inherited blood disorders in Trinidad and Tobago. Her tireless advocacy, unwavering commitment, and deep empathy laid the foundation for what would become the country’s foremost support and advocacy organization for patients with Thalassemia, Sickle Cell Disease, and Hemophilia.
In 1983, moved by the struggles of families affected by these conditions and the lack of awareness and treatment, Dr. Charles founded what was then a Thalassemia support group. Through her leadership, it evolved into SISBDTT in 1986—a registered non-profit organization committed to addressing the broader needs of the IBD community. For over four decades, she was the heartbeat of the Society, leading with integrity, purpose, and love.
Dr. Charles was more than a doctor to her patients—she was a fierce advocate, a counselor, and a trusted friend. She worked relentlessly to secure medications, equipment, and services for those in need. Her efforts led to policy changes, improved treatment protocols, and increased public awareness. Her dedication extended beyond the clinical, as she brought families together, offered comfort in times of despair, and empowered a generation to carry the torch forward.
Even in her later years, Dr. Charles remained deeply involved as one of SISBDTT’s technical advisors, offering her knowledge, wisdom, and encouragement to both patients and the next generation of leaders within the organization. Her legacy lives on in every life that has been touched by the Society’s work.
We at SISBDTT are eternally grateful for the path she paved. Her vision continues to guide us, and her spirit remains ever-present in our mission. Rest in peace, Dr. Charles—your light continues to shine.
From the Society for Inherited and Severe Blood Disorders of Trinidad and Tobago (SISBDTT)
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