World Federation of Hemophilia: Cornerstone of global development

For nearly 50 years, the World Federation of Hemophilia (WFH) has provided global leadership to improve and sustain care for people with inherited bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and inherited platelet disorders.

We save and improve lives by:

training experts in the field to properly diagnose and manage patients;
advocating for adequate supply of safe treatment products; and
educating and empowering people with bleeding disorders to help them live healthier, longer and more productive lives.

However, much more still remains to be done. The reality is that 75 per cent of people with bleeding disorders still receive very inadequate treatment or no treatment at all. The percentage is even higher for those with von Willebrand disease and rare factor deficiencies.

Our vision of “Treatment For All” is that one day, all people with a bleeding disorder will have proper care, no matter where they live. Treatment for All means:

proper diagnosis, management, and care by a multidisciplinary team of trained specialists;
safe, effective treatment products for all people with bleeding disorders; and
expanding services beyond hemophilia, to those with von Willebrand disease, rare factor deficiencies, and inherited platelet disorders.

The World Federation of Hemophilia (WFH), an international not-for-profit organization, was established in 1963. It is a global network of patient organizations in 118 countries and has official recognition from the World Health Organization.

Our mission

The World Federation of Hemophilia improves and sustains care for people with inherited bleeding disorders around the world.

The World Federation of Hemophilia (WFH) will be another of the important sponsors of our congress and particularly of the IV International Workshop on Hemophilia, which will be dedicated to the WFH´s 50^th anniversary, what during these fifty years has developed a valuable and fruitful work in the benefit of hemophiliacs throughout the world.

CAREST is the acronym for Caribbean Association for Researchers in Sickle Cell Disease and Thalassemia.

Steering committee

Guadeloupe (CIC-EC Antilles-Guiane (Inserm/UAG, CHU de Pointe-à-Pitre)

Martinique (CH Lamentin)

Trinidad & Tobago (UWI-St Augustine)

Jamaica (Sickle Cell Unit Kingston)

Dominican Republic

Haiti

Cuba  (Instituto de Hematología e Inmunología, Havana)

INTRODUCTION

In 1910 the first case of Sickle Cell Disease was reported in the western medical literature by James Herrick. In that report he described Sickle Cell Disease in a Grenadian Dental Student.

Countries in the region share a common ancestral heritage resulting in the presence of genes coding for abnormal haemoglobins being present with significant frequencies. The United Nations (UN) has recognized the public health burden of sickle cell and has declared JUNE 19TH, as the “World Day of Sickle Cell Disease”.

Neonatal Screening has emerged as one of the most cost-effective public health strategy to address the public health burden of Sickle Cell Disease in areas with high prevalence of the Sickle Cell gene. The institution of successful national neonatal screening programmes requires a comprehensive health policy, that apportions adequate financial, human and laboratory resources, and health service systems that facilitates a multidisciplinary approach to health promotion, education and management for children and adults with sickle cell disease.

A network of researchers and clinicians, supported by the CIC-EC 802 French Caribbean-French Guyana and the Sickle Cell Unit, TMRI  Jamaica, has been recently established  with the aim of assisting Caribbean countries to respond to the public health burden of Sickle Cell Disease  through the provision of technical advice, epidemiological data and coordination of research on health priorities.

Some key dates

-1910: 1st western report of a case of sickle cell disease in a Grenadian Man

-1997: 1st Meeting inter-Caribbean of  associations of patients with sickle cell disease COSCA (Caribbean Association of Sickle Cell Disease associations)

-2006: – 1st Sickle Cell Disease Conference of Caribbean researchers and clinicians: 11 Caribbean islands (Bahamas, Barbados, Cuba, Dominica, Guadeloupe, French Guyana, Haïti, Jamaica, Martinique, Dominican Republic, Trinidad) – Resolution taken : To set up a Steering Committee  of  Caribbean network of sickle cell disease (CAREST : Caribbean Network of Researchers on Sickle Cell Disease and Thalassemia).

-2007: First meeting in Guadeloupe of the CAREST Steering committee: (Guadeloupe, Jamaica, Martinique, Trinidad).   CAREST coordination awarded to Guadeloupe

–2008: UN recognizes sickle cell disease as a public health problem

-2009: CAREST presentation at the meeting of PAHO in Brasil by Marvin REID (Jamaica)

-2009 : Entry of Cuba to CAREST

-2010 : Thalassemia added to portfolio

CAREST OBJECTIVES

• Promote Sickle Cell Disease and Thalassemia as public health concerns in the region.
• Provide epidemiological and other health data  on Sickle Cell Disease and Thalassemia for policymakers.
• Improve the quality of care offered to persons and their families affected with Sickle Cell Disease and Thalassemia by the creation of clinical protocols or standard of care guidelines appropriate to the level of development within each territory.
• Provide the framework for collaborative research on research priorities in Sickle Cell Disease and Thalassemia within the region.
• Act as a technical resource for families, non-governmental organizations NGOs and governments in the region on Sickle Cell Disease and Thalassemia.

CAREST Executive board

Marie-Dominique Hardi-Dessources, President (Guadaloupe)

Marvin Reid, Vicepresident (JAMAICA)

Rinaldo Villaescusa-Blanco, Vicepresident (CUBA)

Gisele Elana, Secretary (MARTINICA)

Lisiane Keclar Christopher, Treasurer (GUADALOUPE)

Members:

Laurence Boutin (HAITI)

Narcise Elanga (FRENCH GUIANA)

Maryse Etienne-Julan (GUADALOUPE)

Altheia Jones-Lecointe (TRINIDAD & TOBAGO)

Jennifer Knight-Madden (JAMAICA)

Rosa M. Nieves Paulino (DOMINICAN REPUBLIC)

Christian Saint-Martin (GUADALOUPE)

Gillian Wheeler (TRINIDAD & TOBAGO).

The PAHO/WHO in Cuba (Pan American Health Organization, regional office for the World Health Organization) has decided to sponsor our congress considering that the events included in the scientific program will develop with high technical and scientific quality.

We are highly satisfied with this sponsoring, of great importance for the organizers of the congress and for everyone participating in this event.

By just clicking here you can now have some details about Cuba.