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ESCF SUMMIT 2024 JUNE 27-29TH

IT’S THAT TIME OF YEAR AGAIN! JOIN US AT CROWNE PLAZA HOTEL, BLANCHARDSTOWN, DUBLIN FOR THIS YEAR’S SUMMIT.
 

THE THEME THIS YEAR IS:  HEALTH EQUITY IN SICKLE CELL DISEASE

REGISTER NOW TO SECURE YOUR SPOT.

AGENDA , SPEAKERS & TOPICS WILL BE AVAILABLE SOON.

SICKLE CELL HAS NO COLOUR
...it's in the blood

The 2nd ESCF International Sickle Cell Disease summit
will be held on the 27th to 29th of June 2024
as a hybrid event in Dublin, Ireland.

Section title

The ESCF International Sickle Cell Disease summit is a pivotal moment in the organisation's role as an umbrella body for all Sickle Cell Organisations in Europe.

A major milestone developed in January 2021 by the founders of the European Sickle Cell Federation ESCF  Ms Lora Ruth Wogu (Chief Operations Officer),  Dr David Zacharie-Issom (Director of Global health education, Information and Research) and Ms Concy Angwec Bwomono (former ESCF President 2019-2023) . ESCF held its Inaugural Summit in September 2021 virtually due to the pandemic with great success.

Section title

Developed as part of education and information sharing among patients among patient organisations with healthcare providers, industry and politicians on areas of lived experiences and hopes for better policies, treatments and management solutions for improved patient outcomes. The summit brings together patients all over Europe and globally and enables healthcare professionals to gather first hand knowledge from a diverse pool of patients lived experiences, vital to effective management of patients under their care.

Dr. Steven Hardy
Dr. Steven Hardy

Dr. Hardy is a pediatric psychologist and Director of Behavioral Health Services in the Divisions of Hematology, Oncology, and Blood and Marrow Transplantation at Children’s National Hospital in Washington, DC. He is also an Associate Professor of Pediatrics and of Psychiatry and Behavioral Sciences at the George Washington University School of Medicine and Health Sciences. He earned his Ph.D. in clinical health psychology from the University of North Carolina at Charlotte, completed an internship at Jackson Memorial Hospital, and completed a psychology fellowship in pediatric hematology, oncology, and BMT at Children’s National Hospital. At Children’s National, Dr. Hardy directs behavioral health services for youth with sickle cell disease, including art therapy, music therapy, and school support services. He provides direct clinical care to children, adolescents, and young adults with sickle cell disease through their integrative pain clinic, meets with patients in the context of transformative therapies, and provides supervision and mentorship to psychology trainees. Dr. Hardy’s research has been funded by nonprofit organizations including the Doris Duke Foundation, as well as by the National Institutes of Health. His work aims to improve early detection of sickle cell-related changes in neurocognitive functioning, develop and test interventions to ameliorate disease-related neurocognitive deficits, and enhance understanding of the interactions between neurocognitive functioning, pain, and quality of life in sickle cell disease.
 

Biree Andemariam
Biree Andemariam

Biree Andemariam, M.D. is Professor of Medicine and the American Red Cross Endowed Chair in Transfusion Medicine at the University of Connecticut School of Medicine. She is a physician scientist in the Division of Hematology/Oncology, Founding Director of the New England Sickle Cell Institute (NESCI), and Director of the Connecticut Bleeding Disorders Center. NESCI’s mission is to provide a medical home for adults with SCD as well as a transition destination for children with SCD. In addition to treating over 350 adults with SCD, the center is also home to numerous clinical and translational research studies. Dr. Andemariam is lead principal investigator of 3 global SCD clinical trials and has extensive experience in clinical trial design, endpoint development, recruitment, and implementation. In the midst of the COVID-19 global crisis, she mobilized and chaired an international committee of experts in the development and worldwide dissemination of guidelines on managing patients with SCD during the pandemic. Dr. Andemariam is the immediate-past Chief Medical Officer of the Sickle Cell Disease Association of America, Inc. During her tenure at the SCDAA, she has been awarded the Chairman’s Award three times (2019, 2020, 2022) for her outstanding and dedicated board service centered around national programmatic development, disease education/awareness, and legislative advocacy.

Dianaba BA
Dianaba BA

Dianaba BA works as a public health consultant and used to be the former CEO of the French Federation for Sickle Cell Disease and Thalassemia Patients’ Organizations (FMDT SOS Globi). She is French and lives in Marseille.  She was born with SCD, a severe form (SS) and has suffered multiple complications. Despite the disease, she has always been very active and managed to travel a lot. She’s studied applied languages and project management in university (a master’s degree) and when she became old enough to realize the burden the disease can represent for the patients and their families, she started advocating as a volunteer at a local level in her city, then at a national level, and now globally as a member of ESCF and ERN.  To add a few words about her, she is the happy mother of an eight months baby and she enjoys cooking, traveling, learning new languages and reading. Besides her commitment to patients with Sickle Cell Disease, she is involved in different projects to support refugees and asylum seekers.

Dr. Ziad Solh
Dr. Ziad Solh

Dr. Ziad Solh is a hematologist and transfusion medicine specialist at London Health Sciences Centre (LHSC) in Canada, and an Associate Professor at Western University. He received his Doctorate in Medicine from the University of Ottawa and his hematology residency training at McMaster University. He then completed the Clinician Investigator Program and a Master of Science degree in Health Research Methodology at McMaster followed by a Transfusion Medicine fellowship with Canadian Blood Services. He currently directs the Adult Hemoglobinopathy Program at LHSC where he sees patients with sickle cell disease and thalassemia, and he is the head of the Transfusion Medicine Division in the laboratory.

Dr. Miguel Abboud
Dr. Miguel Abboud
Diane Patterson BSc HDipEd BSc (Pharm) MSc MPSI
Diane Patterson BSc HDipEd BSc (Pharm) MSc MPSI
Ify Osunkwo
Ify Osunkwo
Dr.Madeleine Verhovsek
Dr.Madeleine Verhovsek

Dr. Madeleine Verhovsek, BSc MD FRCPC is a Professor of Medicine, and Pathology & Molecular Medicine at McMaster University. She is the Director of the Adult Hemoglobinopathy Program at McMaster University Medical Centre and the Chief of Medicine at St. Joseph’s Healthcare Hamilton. Dr. Verhovsek is on the board of directors and executive of the Canadian Haemoglobinopathy Association.

Kofi A. Anie PhD
Kofi A. Anie PhD

Dr Anie is the Psychology Service Lead for children and adults with sickle cell disease and thalassaemia at London North West University Healthcare NHS Trust, and the Deputy Clinical Director for the West London Haemoglobinopathy Coordinating Centre.

Dr Anie began his professional career at King’s College Hospital, London where he pioneered psychological interventions for children with sickle cell disease. He is a Fellow of the Royal Society of Medicine and Associate Fellow of the British Psychological Society; his other professional affiliations include the British Association of Behavioural and Cognitive Psychotherapies, and American Psychological Association.

Dr Anie has been involved in development of national clinical guidelines and standards of care for sickle cell disease in the UK and Africa. He is currently a Scientific Advisor to Sickle Cell Society.

Dr Anie is a collaborator on several international initiatives including the Ethics and Community Engagement Core Lead of Human Heredity and Health in Africa (H3Africa) Sickle Cell Disease Genomics of Africa (SickleGenAfrica) Network. He is presently a visiting faculty at the West African Genetics Medicine Centre (WAGMC) at the University of Ghana. His professional aspiration is owed to a life-long personal and family experience of sickle cell disease. He was awarded with Member of the Order of the British Empire (MBE) for Services to People with Sickle Cell Disease and Thalassaemia in the 2017 Queen’s Birthday Honours.
 

Dr. Edward Donnell Ivy
Dr. Edward Donnell Ivy

Dr. Ivy uses his personal and professional experiences to improve care for individuals with health conditions, including sickle cell disease, by working collaboratively to strengthen the public health infrastructure. Currently, Dr. Ivy works with the Association of Black Cardiologists, Inc (ABC) as the Health Education Coordinator. He also currently serves as the Vice Chief Medical Officer for the Sickle Cell Disease Association of America (SCDAA). Prior to joining the ABC and SCDAA, Dr. Ivy worked with the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) as the Program Director of the Hemoglobinopathies Program, which included the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), the Sickle Cell Disease Newborn Screening Program (SCDNBSP) and the Thalassemia Program. Dr. Ivy worked at the National Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health where he was part of the team that developed the NHLBI Sickle Cell Disease Treatment Recommendations of 2014. Dr. Ivy completed his medical school education at East Carolina University School of Medicine. After starting a residency in Pediatrics, Dr. Ivy realized his interest in public health and attended the University of North Carolina at Chapel Hill School of Public Health where he received his Masters in Public Health with honors.

John Lawal
John Lawal

John Lawal is a multifaceted creative force who bridges the worlds of information technology and artistic expression. Based in Oxford, UK, John is a published author, poet and motivational speaker who inspires audiences across the UK, Ireland, and beyond.

His writing explores a variety of themes, including poetry, spirituality, positive thinking, soul exploration, and romance.

He also writes under the pen name "The Whisperer."

Lora Ruth Wogu
Lora Ruth Wogu

Lora Ruth Wogu is the founder and CEO of Sickle Cell and Thalassaemia Ireland, a national patient and parent support and advocacy organisation for raising awareness and advancement of patients’ quality of life with Sickle Cell disease and Thalassaemia disease in Ireland, Europe and global level.
She is also founder and Chief Operations Officer of the European Sickle Federation, an umbrella network of patient organisations advocating for Sickle Cell Disease advancement in Europe.

Lora Works at St Vincent’s University hospital professionally, though spends most of her free time advocating for Sickle Cell Disease and Migrant Health.
She holds a BSC in Healthcare Management, a MSc in Quality and Patient Safety in Health Care management and various professional certificates.
Other Patient and Public Representative roles
As a patient advocate, public and community leader, Lora advocates and represents on various committees, subcommittees (not listed) and initiatives which includes;
1. Public Patient representative -Ignite Network Public Advisory Board.
2. Public Voice- Department of Health National Screening Advisory Committee (NSAC) since 2022
3. Patient representative - Health Services Executive Patient Forum since 2022
4. ESCF representative - EURORDIS New born Screening steering Committee for rare diseases.
5. Patient representative -European Medicine’s Agency Scientific board since 2016,
6. Patient representative -St James Hospital Patient Representative Group since 2016,
7. Public representative -National Screening Service Ireland PPP since 2019
8. Board member - Scoil Sinead Patronage for Autism inclusion in main stream education
9. Board Member Griffeen Community College since 2018
 

Dr. Raffaela Colombatti
Dr. Raffaela Colombatti
Dr. Reto Wirz
Dr. Reto Wirz
Sandra Newton
Sandra Newton

Dr. Sandra Newton is a registered Clinical and School Psychologist living and working in the Greater Toronto Area, Ontario, Canada. She has been trained in developmental, clinical, and school psychology methods and interventions (M.A. and Ph.D., University of Toronto) and practiced in a variety of educational, clinical, and community settings. In her work with the Sickle Cell Awareness Group of Ontario (SCAGO), Dr. Newton is able to pursue longstanding interests in providing advocacy, community education, and support for children, youth, and adults with sickle cell disease. She facilitates workshops, Peer Support Group sessions, and supports research initiatives, most recently a Public-Health Agency of Canada study investigating Vaccination Acceptance within the Sickle Cell Disease/Black Community.

Gabriel Badejo
Gabriel Badejo

Gabriel Badejo is a visionary Nigerian-Canadian filmmaker based in Toronto. With a rich ten-year career spanning commercials, branded content, TV, and documentaries, he has crafted compelling narratives and innovative visual content that captivate audiences worldwide. As the Executive Producer and Co-Owner of Post Office Creative, Gabriel has been pivotal in shaping the company's success and reputation.

Beyond his cinematic endeavours, Gabriel is a passionate advocate for sickle cell anemia awareness, a cause deeply personal to him. Living with the condition, he aims to shed light on a blood disorder that disproportionately affects Black communities. Gabriel's commitment to raising awareness includes numerous community speaking engagements and contributing to the Ontario Health Quality Standard Committee for Sickle Cell Anemia, influencing discussions on curative treatments and care standards.

Currently, Gabriel is channelling his talents into his debut feature documentary, a personal and eye-opening project exploring his journey with sickle cell anemia and highlighting the inequalities in Western healthcare systems. Through this work, Gabriel continues to blur the lines between art and activism, using his platform to advocate for change, inspire understanding, and foster empathy within society.

Dr. Deji Ayonrinde
Dr. Deji Ayonrinde

Dr. Ayonrinde is a community psychiatrist in Kingston, Ontario, Canada and Clinical Director for the Community Mental Health Programmes. He is an Associate Professor at Queen’s University and holds cross-departmental appointments in the departments of Psychiatry and Psychology as well as the School of Nursing. His global health areas of interest are related to social determinants of health, health equity, migration and marginalized populations.
His specialty training in Psychiatry and the Addictions was at the Bethlem Royal and Maudsley Hospitals in London (UK) in conjunction with the Institute of Psychiatry, Psychology and Neuroscience. He has an MSc in Psychiatric Research from the University of London, a Diploma in History of Medicine from the Society of Apothecaries and an Executive MBA from Imperial College London. He is a Fellow of the Royal College of Psychiatrists and an International Fellow of the American Psychiatric Association.
Dr. Ayonrinde has acted in consultation, training and advisory roles for a number of health services around the world and maintains active interest in cannabis and mental health, public health policy and health ethics.
As a researcher, educator and clinician, he has been the recipient of several honours and awards for innovative scholarship, advocacy and health initiatives including the Imperial College Business School Prize for Research in Organizational Behaviour and the Freedom of the City of London in the UK. In Canada, the Partners in Research Biomedical Ambassador Award, the Kingston Health Sciences Centre Knowledge Translation Award and the Queen’s University Faculty of Health Sciences Educator Award.

Jenica Leah
Jenica Leah

Jenica Leah is an international ambassador for sickle cell, award winning author and charity director. She is currently Interim president for the European Sickle Cell Federation (ESCF) as well as a specialist speaker, blogger and podcast host. She has been a trailblazer in creating resources that educate and spread awareness about sickle cell since she released the first children’s book series about the blood disorder back in 2016. The series, entitled ‘My Friend Jen’ has won several awards for its importance and influence in health care and is now an internationally recognised brand for the sickle cell community. Jenica is dedicated to bringing more awareness to sickle cell across the globe and continues to expand her advocacy work as far and wide as possible.
 

A. Kinga Malinowski, MD, MSc, FRCSC
A. Kinga Malinowski, MD, MSc, FRCSC
Adesiyan Apesin
Adesiyan Apesin
Prof. Corrina McMahon
Prof. Corrina McMahon
Aghate Wakunga
Aghate Wakunga

SUMMIT SPONSORS

Platinum Sponsor
Platinum Sponsor
Silver Sponsors
Silver Sponsors
Bronze Sponsor
Bronze Sponsor
OUR MISSION

Our Mission is to engage in a united, unique and strong voice for Sickle Cell patients, family members, carers, and all national patient organisations of people with Sickle Cell Disease.

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