General Assembly – Moral report from the Board Chair
Dear members, friends
I thank you all for your presence at this General Meeting which brings us together once again with a major objective, that of renewing our Board of Directors. There is no doubt that the applicants for this Board are committed to carrying out CAREST’s missions by continuing and amplifying the work well under way.
Over the last couple of months, we have successfully completed a number of projects including the completion of our 5th Caribbean Conference (24-26 October 2018). I like to recall the positive effects of this conference, including our better insertion in our Caribbean Basin today. The other most significant events are intrinsically linked to our primary mission: to provide a better quality of life for sickle cell disease patients in this region.
Let me therefore briefly remind them to you:
- Promote access to neonatal screening for sickle cell disease
- Resumption of neonatal screening in Grenada; support to Dr. Edda Hadeed, President of the Antiguan and Barbuda Sickle Cell Association, for the launch of a pilot study in Antigua; mission in the Dominican Republic organized with Dr. Rosa Nieves and one-site meeting of all stakeholders in the screening and management of sickle cell disease and thalassemias (28-31 May 2019); contacts with Ms. Kellyn George, Founder and Director of the Foundation “Sickle Cell Cares”in Dominica; discussions with Drs Areefa Alladin-Karan and Pheona Raffina Mohamed-Rambaran, in charge of sickle cell disease management in Guyana and with Dr. John Codrington, head of the Biology Laboratory in Surinam.
- Promote the training of health professionals
- Procedures for registering Dr. Nora Saint-Victor Dely, a pediatrician from Haiti, for the Sickle Cell Disease University Degree and for the completion of an internship at the Guadeloupe sickle cell disease reference centre
- Launching of the Working Groups
- Screening and early management: Pilots Drs Ketty Lee and Jacques Elion
- •Research : Pilots Drs Caroline Le Van Kim and Marc Romana
- Communication – coordination: Yohann Garnier, Lisiane Keclard, Marie-Dominique Hardy-Dessources
- Restructuring of the website
- Activities relating to the world Sickle cell Day-
- Organization of an e-Health workshop to test a robot currently launched by David Issom a referent patient, “Trevor”, the Drepano Coach robot, a prototype of an artificial intelligence that helps people with sickle cell disease via instant messaging applications. Part of these meetings will soon be available on the website
- CAREST attendance at various conferences:
- Sickle Cell In Focus (SCiF), Jamaica 10-11 October 2019;
- Caribbean Science Innovation, Guadeloupe 21-23 October 2019
- Sickle cell disease in the Guiana Shield, French Guyana 23-25 October 2019
We remain mobilized to carry out ongoing screening programs and those that have not been launched. These programs are now funded via the “Interreg V- Caribbean” funds dedicated to the development of cooperation between the French West Indies and the member countries of the Organization of Eastern Caribbean States (cross-border component), a major asset to support the activities envisaged by the Grenada Ministry of Health and the Antigua & Barbuda and Dominica Patients Associations.
Similar funding should be secured to support cooperation with the transnational component of the program, entailing therefore the coverage of the other eligible Caribbean countries and territories. We can already consider projects to submit.
In the Screening and Management Workshop, we will define the strategy to be implemented in line with the expectations and resources of the countries concerned.
Similarly, the work that will be carried out within the Research Workshop should allow for the selection of research fields that can lead to collaborative projects. Here again financing is crucial, we will have to think together about accessible sources.
The next Conference should be held in the course of the year 2021. In compliance with our rotation strategy, it should be held in a Spanish-speaking country. The Dominican Republic is therefore in first position.
Thank you all for the work done.
Marie-Dominique HARDY-DESOURCES 15 November 2019