On 16 January 2026, CAREST and its partners came together in Guadeloupe and online for the public launch of the SHELTER programme. In the months that followed, the first field exchanges, professional mobilities and the structuring of the different work streams 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 under way.
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 differing care systems, resources, professional practices and 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 specific realities of each territory, connecting 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, with ten Caribbean countries and territories represented. Health professionals, researchers, representatives of patient organisations and institutional partners shared the programme’s objectives, its main work streams and the first prospects for cooperation.
This geographical diversity gives the measure of the dynamic under way: from its public launch, SHELTER connected people 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 intended to take shape across the territories.
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 Thalassemia — 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 exchange and to bring about collaborations around shared challenges.
SHELTER now gives this cooperation a new framework and makes it possible to structure its activities 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 action.
SHELTER: a name that describes the programme
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, lifelong health management, treatment, epidemiology and research.
In everyday English, the word shelter also means a place of refuge, carrying by extension an idea of protection.
Within the programme, that resonance evokes a common framework in which territories can bring together their experiences, their knowledge and their skills around sickle cell disease.
The name therefore expresses both the components of the programme and its purpose: to build a lasting framework for 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 broad, complementary priorities.
By encouraging the sharing of experience around clinical practice, the prevention of complications and access to treatments of established efficacy, notably hydroxyurea. This strand is led by MADREPORE 971. It includes training in therapeutic patient education, training in transcranial Doppler ultrasound — the examination used to identify children at high risk of stroke — and a multicentre study on oxygen therapy, conducted in French Guiana at Cayenne Hospital.
So that the skills and experience gained 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 takes shape in particular through DREPAdata, a step-by-step approach aimed at identifying existing data resources, understanding how they are produced and building the conditions for better comparison between territories. This knowledge should help to inform 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 UMR S-1134 / BIGR unit in Guadeloupe.
These four dimensions follow the same logic: circulating 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: each can pass on, compare, adapt and learn.
Six months on: the first cooperation activities under way
In the months following the meeting of 16 January, this dynamic began to take shape on the ground.
Dominica: cooperating from the realities of the territory
Exchanges have begun with teams in Dominica in order to better understand locally identified needs, 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 in Guadeloupe for a period of training and exchange of practice.
This mobility directly illustrates one of SHELTER’s principles: creating spaces where the experience gained in one territory can be shared, questioned and enriched by that of others.
These exchanges do not run in one direction only. Antigua and Barbuda, which initially received support for its newborn screening for sickle cell disease, now funds it entirely — and brings to the network field experience that the better-resourced territories do not have.
Structuring the programme’s work streams
Alongside these activities, the partners are continuing their work on care pathways, training, data resources and scientific collaboration.
These first sequences are the earliest visible markers of the dynamic under way since the public launch.
They are also building the programme’s memory. Missions, training sessions, meetings, outputs, tools and results are progressively documented in order to keep a record of the work accomplished and to turn the experience gained into resources that remain useful for the rest of SHELTER and beyond each individual activity.
A partnership on a Caribbean scale
CAREST — the Caribbean Network of Researchers on Sickle Cell Disease and Thalassemia — acts as lead partner for 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 work of the cross-disciplinary sickle cell disease unit at Pointe-à-Pitre / Abymes University Hospital and of the Antilles-Guyane reference centre for rare diseases. It helps 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 body entirely dedicated to human health. Its UMR_S 1134 unit, whose Guadeloupe team is based at 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 contracted partnership brings together ten organisations located in Guadeloupe, Martinique, French Guiana, Cuba, Jamaica, Grenada, Antigua and Barbuda, and Tobago. It gathers actors 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 an essential lever to bring practices closer together and strengthen care capacity throughout the Caribbean. This means, in particular, sharing common reference points 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 geography of the partnership 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 Thalassemia |
| European programme | Interreg Caribbean 2021–2027 |
| Priority | Priority 4 — A more social and inclusive Caribbean |
| Specific objective | Access to healthcare and health systems |
| Contractual implementation period | 1 January 2024 — 31 December 2027 |
| Public launch | 16 January 2026 — Salako hotel, 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 liability for any use that may be made of the information it contains.
