On 16 January 2026, CAREST and its partners came together in Guadeloupe and online for the public launch of the SHELTER programme. In the first months following that meeting, the initial exchanges in the field, the professional mobility schemes and the structuring of the various strands of work have given concrete expression to this Caribbean cooperation on sickle cell disease. This article looks back at the programme’s starting point, its identity and the first dynamics set in motion.
A shared starting point for a plural Caribbean reality
Sickle cell disease is a health issue shared by many territories across the Caribbean. Behind this common reality lie different care systems, different resources, different professional practices and different levels of epidemiological knowledge.
This diversity is SHELTER’s starting point. It makes it possible to organise a form of cooperation that takes account of the realities specific to each territory and connects health professionals, researchers, health institutions and patient organisations facing the same health challenge.
On 16 January 2026, the public launch of SHELTER brought together, in person and online, close to 60 participants from some fifteen Caribbean countries and territories. Health professionals, researchers, representatives of patient organisations and institutional partners shared the programme’s objectives, its main strands of work and the first prospects for cooperation.
This geographical diversity gives the measure of the dynamic under way: from its public launch onwards, SHELTER has connected stakeholders from different territories, health systems, languages and professional contexts around a single health issue.
The launch was thus the first visible step in a dynamic that is intended to take shape within the territories themselves.
Cooperation built to last
SHELTER builds on more than a decade of Caribbean cooperation led by CAREST.
Since 2012, the Caribbean Network of Researchers on Sickle Cell Disease and Thalassaemia — CAREST — has been building links between researchers, clinicians, health professionals, institutions and patient organisations across the Caribbean basin.
Over the years, these relationships have made it possible to gain a better understanding of the realities of the different territories, to encourage professional exchanges and to give rise to collaborations around shared concerns.
SHELTER now gives this cooperation a new framework and makes it possible to structure its actions around care, patient follow-up, training, epidemiology and research.
The experience acquired by CAREST is therefore one of the programme’s foundations: relationships built over time become the bedrock of new joint actions.
SHELTER: a name that says what the programme is
The name SHELTER brings together the programme’s main dimensions:
disease
management
Lifetime
These terms point to the main fields around which the programme is organised: sickle cell disease, health management over a lifetime, treatment, epidemiology and research.
In English, the word shelter also means a place of refuge and carries, by extension, an idea of protection.
Within the programme, this resonance evokes a common framework in which territories can bring together their experience, their knowledge and their skills around sickle cell disease.
The name therefore conveys both the components of the programme and its purpose: to build a lasting framework of cooperation around people living with sickle cell disease in the Caribbean.
Cooperation built around four priorities
One question guides the programme as a whole: what can regional cooperation concretely improve for people living with sickle cell disease in the Caribbean?
SHELTER organises its work around four complementary priorities.
By encouraging the sharing of experience around clinical practice, the prevention of complications and access to treatments of established efficacy. This strand is led by MADREPORE 971. It includes training in therapeutic patient education, training in transcranial Doppler ultrasound — an examination that identifies children at high risk of stroke — and a multicentre study on oxygen therapy, conducted in French Guiana at Cayenne Hospital, in Martinique and in Guadeloupe.
So that the skills and experience acquired in one territory can become resources for the others. This priority takes the form of exchanges of practice and immersion placements between Caribbean health professionals. Training activities and exchange missions are planned in Grenada, Antigua and Barbuda, Dominica and Saint Lucia.
This strand, led by the lead partner CAREST, takes shape in particular through DREPAdata, a step-by-step approach aimed at identifying existing data resources, understanding how they are produced and creating the conditions for better comparison between territories. This knowledge should help to inform clinical care, public health and research.
To better understand the disease, its complications and therapeutic responses, drawing on the complementary expertise of the partner teams. This strand is led by the INSERM unit UMR S-1134 / BIGR, in Guadeloupe.
These four dimensions follow the same logic: to circulate knowledge, practices and experience in order to strengthen each territory’s capacity to act.
SHELTER thus turns Caribbean diversity into a resource for cooperation. Each partner brings to the collective an experience, methods, skills or questions arising from its own context. This circulation works in several directions: everyone can pass on, compare, adapt and learn.
Six months on: the first cooperation activities in action
In the months following the meeting of 16 January, this dynamic began to take shape in the field.
Dominica: cooperating on the basis of local realities
Exchanges were initiated between health professionals in Guadeloupe and their counterparts in Dominica in order to better understand the needs identified locally, existing practices and the prospects for cooperation with the other members of the network.
Antigua and Barbuda: circulating experience
Professionals from Antigua and Barbuda were also welcomed to Guadeloupe for a period of training and exchange of practice.
This mobility is a direct illustration of one of SHELTER’s principles: creating spaces where the experience acquired in one territory can be shared, questioned and enriched by that of others.
These exchanges are not one-way. Antigua and Barbuda, which initially received support for its newborn screening for sickle cell disease, now carries it out entirely on its own, and brings to the network field experience that could be shared with territories that do not yet have such screening.
Structuring the programme’s different strands
Alongside these activities, the partners are continuing their work on care pathways, training, data resources and scientific collaborations.
These first sequences are the earliest visible markers of the dynamic set in motion since the public launch.
They are part of building the programme.
A partnership on a Caribbean scale
CAREST — the Caribbean Network of Researchers on Sickle Cell Disease and Thalassaemia — acts as the lead partner of SHELTER. The association coordinates the project and drives regional cooperation on the disease.
It relies on two main community partners.
Madrépore supports the training of health professionals in sickle cell disease, red blood cell disorders and other rare diseases. The association supports the activities of the Cross-Disciplinary Sickle Cell Unit of the Pointe-à-Pitre / Abymes University Hospital and of the Antilles-Guyane reference centre for rare diseases. It works to improve the reception of patients and their families, to promote information and public health initiatives, and to develop collaborations with the associations and institutions concerned. Within SHELTER, it leads the strand devoted to care pathways and training.
Inserm is the only French public research organisation entirely dedicated to human health. Its UMR_S 1134 unit, whose Guadeloupe team is based at the Pointe-à-Pitre University Hospital, works on red blood cell biology. Within SHELTER, it contributes to the research strand and to the scientific structuring of work aimed at better understanding sickle cell disease and strengthening regional scientific cooperation.
The contractual partnership brings together ten organisations, located in Guadeloupe, Martinique, French Guiana, Cuba, Jamaica, Grenada, Antigua and Barbuda and Tobago. It gathers stakeholders from research, care, health institutions and the voluntary sector around a shared ambition: to advance regional cooperation on sickle cell disease.
The programme also carries out activities in four further territories — Haiti, Dominica, Saint Lucia and Sint Maarten — making twelve territories involved in total.
This regional dimension is a key lever for bringing practices closer together and strengthening care capacity throughout the Caribbean. This means, in particular, sharing common benchmarks for the interpretation of examinations, patient follow-up and the prevention of complications, while taking account of the differences between health systems, available resources and the organisational arrangements specific to each territory.
This partnership geography reflects SHELTER’s regional purpose: connecting skills, experience and needs around a health issue shared across the Caribbean.
This is where SHELTER takes on its full meaning: making cooperation a collective capacity to act.
This article is part of a series devoted to the first months of the SHELTER programme.
→ Find all the publications on the SHELTER News page.
Programme at a glance
| Programme | SHELTER — Sickle cell disease, HEalth management over Lifetime, Treatment, Epidemiology, Research |
|---|---|
| Lead partner | CAREST — Caribbean Network of Researchers on Sickle Cell Disease and Thalassaemia |
| European programme | INTERREG Caribbean 2021–2027 |
| Priority | Priority 4 — A more social and inclusive Caribbean |
| Specific objective | Access to care and health systems |
| Contractual implementation period | 1 January 2024 — 31 December 2027 |
| Public launch | 16 January 2026 — Hôtel Salako, Le Gosier, Guadeloupe — hybrid format |
| Total eligible cost of the operation | €1,223,871.51 |
| Maximum ERDF contribution | €742,724.51 |
| Reference | SYNERGIE-CTE no. 21284 |
Lead partner and main partners
The SHELTER project is co-financed by the INTERREG Caribbean programme under the European Regional Development Fund.
The content of this publication reflects the views of its author. The programme Authorities accept no responsibility for any use that may be made of the information it contains.
