Institutional Resources

The Thalassaemia International Federation (TIF) is a non-profit, non-governmental umbrella federation, established in 1986, working in official relations with the World Health Organisation (WHO) since 1996. To-date membership boasts 190 members from 62 countries.

Our mission is to promote optimal quality care for all patients with thalassaemia worldwide.

Most remarkably, TIF has been awarded in the context of the 68th World Health Assembly in May 2015, ‘Dr Lee Jong-wook Memorial Prize’ for the Federation’s outstanding contribution to public health in our work for promoting the development and implementation of national control programmes (prevention and clinical management) for thalassaemia across the world.

https://thalassaemia.org.cy/

The program is designed to provide primary through tertiary care along with education, outreach, genetic counseling, and psychosocial care to patients, their families and those at risk for carrying the disease. In addition to providing comprehensive care, the center is at the forefront of research, developing and evaluating treatments aimed at improving quality of life for thalassemia patients.
http://www.thalassemia.com

The International Federation of Clinical Chemistry and Laboratory Medicine (IFCC) is a worldwide, nonpolitical organization for clinical chemistry and laboratory medicine. As such it has a range of roles that include (1) global standard setting in collaboration with other international organizations, (2) supporting its members through scientific and educational endeavour, and (3) providing a series of congresses, conferences and focussed meetings in order for laboratory medicine specialists to meet and present original
findings and best practice.

Our mission is to be the leading organization in the field of Clinical Chemistry and Laboratory Medicine worldwide.
https://www.ifcc.org/

The International Council for Standardization in Haematology (ICSH) is a not-for-profit organisation that aims to achieve reliable and reproducible results in laboratory analysis in the field of diagnostic haematology. This includes guidelines for generation of accurate and reproducible results in diagnosis of Haemoglobinopathies and Thalassaemia Syndromes.
https://icsh.org/guidelines/

The National Newborn Screening & Global Resource Center (NNSGRC) provides information and resources in the area of newborn screening and genetics to benefit health professionals, the public health community, consumers and government officials.
http://genes-r-us.uthscsa.edu/

ENERCA is an acronym for EUROPEAN NETWORK FOR RARE AND CONGENITAL ANAEMIAS. In this network, different experts are working together with the purpose of offering an improved public health service to professional medical practitioners and patients in every aspect of rare anaemias.
http://www.enerca.org/

HbVar is a relational database of information about genetic variants and mutations that alter hemoglobins or cause thalassemia. The HbVar project is an international collaboration. Current curators are George Patrinos at the University of Patras (Greece), Philippe Joly at the Hôpital Edouard Herriot in Lyon (France), Henri Wajcman at INSERM Creteil (France), Kamran Moradkhani at the Institute of Biology, Nantes (France), Joseph Borg at the Mater Dei Hospital (Malta), and David Chui at the Boston University Medical Center (USA). Database administration and oversight is by Belinda Giardine and Ross Hardison at The Pennsylvania State University (USA).
http://globin.cse.psu.edu/hbvar/

The ITHANET Portal represents an expanding resource for clinicians and researchers dealing with haemoglobinopathies and a port of call for patients in search of professional advice. The ITHANET Portal integrates information on news, events, clinical trials and thalassaemia-related organisations, research projects and other scientific networks, wiki-based content of protocols, clinical guidelines and educational articles. Most importantly, disease-specific databases are developed and maintained on the ITHANET Portal, such as databases of haemoglobin variations (IthaGenes), epidemiology (IthaMaps) and HbF inducers (IthaDrugs).
http://www.ithanet.eu

GeneTests is a medical genetics information resource that provides health care professionals with current, authoritative information on genetic testing and its use in diagnosis, management, and genetic counseling to patients and their families. GeneTests is available at no cost.
http://www.genetests.org/

GenomeNet Database Resource is an integrated database retrieval system for major biological databases.
http://www.genome.jp/

The National Diabetes Information Clearinghouse (NDIC) is an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health (NIH), which is part of the U.S. Department of Health and Human Services. NDIC was established in 1978 to increase knowledge and understanding about diabetes among patients, health care professionals, and the general public.
https://www.niddk.nih.gov/health-information/diabetes

PubMed is a U.S. National Library of Medicine database that comprises more than 25 million citations for biomedical literature from
MEDLINE, life science journals, and online books. Time coverage of available material from 1946 to present.
http://www.ncbi.nlm.nih.gov/pubmed/