Thalassemia

You know, hemoglobin is a wonderful substance. I like it. It’s a red substance that brings color into the cheeks of girls, and in the course of my hemoglobin investigation I look about a good bit to appreciate it - Linus Pauling

Thalassemia
Thalassemia

image by: Thalassemia silence killed new generation

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Thalassemia: Understanding the Disease

Thalassemia is a serious inherited blood disorder. Thalassemia Major patients require life long repeated blood transfusions and costly medicines for their survival.  Often the blood transfusion needs to be carried out on monthly basis. Of course, it depends on individual cases. Some even require it every week.

The proper managing of this disease requires, besides these transfusions, costly medicines, including Desferal injections that need to be infused over a period of several hours. That means the patient has to keep the injection and the infusion pump attached to the body over a period of ten-twelve hours, several days a week. The only treatment available is Bone Marrow Transplant,…

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Resources

 Thalassemia: Understanding the Disease

Thalassemia is one of the most common genetic disorder in the world. An estimated 250 million people, that is, 4.5% population of the world is affected by Thalassemia. This is just a rough estimate and the real thalassemia population can far exceed that number.

Cure Thalassemia

To cure (becoming thalassemia free,so no more transfusions) with Bone Marrow Transplantation (BMT) as many beta thalassemia major children as possible,who can’t afford the cost of the cure,through the cross-subsidization business model.

ThalTracker

thalTracker is designed for adults and adolescents with Thalassemia and iron overload. It has been designed by a group of patients and Thalassemia specialists in Canada to help patients to better self-manage their chronic blood disorder.

International Thalassaemia Day

For the global thalassaemia family, the 8th of May constitutes a very special day as it is dedicated to both commemorate the thalassaemia patients who are no longer with us but are always close in our heart and to celebrate all those patients who are alive and fighting everyday for their right to a better quality of life.

Thalassaemia International Federation

Our mission is the development and establishment of National Control Programmes for the prevention and quality treatment of thalassaemia and other haemoglobin disorders in every affected country and in particular where frequency, incidence and prevalence of these disorders are high.

Thalassemia & Sickle Cell Society

Society has been actively supporting research activities for improving patients treatment and in identification of mutations status. For HLA tying and later to guide patients for a permanent cure like bone marrow transplantation(BMT), gene therapy, etc.

Thalassemia N Me

This website was formed to share everything on Thalassemia to my personal life. The main objective of building this website is to let everyone know more about Thalassemia condition and spreading the awareness.

Thalassemia Patients and Friends

A message for all parents who are thals. Keeping your iron load under control is an absolute obligation to your children.

Thalassemia silence killed new generation

Promotes awareness for premarital thalassemia screening...

Thalassemia.com

The purpose of this website is to raise awareness and educate the patient community, the medical community, and the community-at-large on thalassemia. Through awareness and education, we strive to increase survival rates and improve the quality of life for patients around the world.

Beta Thalassemia Major & LIVING

I decided to begin an account of the struggles & triumphs my daughter faces on a daily basis, living with Beta Thalassemia Major (Cooleys Anemia). She's an amazing, vibrant, beautiful little girl, that has more experience, wisdom and grace than some adults out there. Hopefully our story will open doors to meeting & connecting with others that have similar lives.

Cooley’s Anemia Foundation

Our mission is advancing the treatment and cure for this fatal blood disease, enhancing the quality of life of patients and educating the medical profession, trait carriers and the public about Cooley’s anemia/thalassemia major.

Emirates Thalassemia Society

Emirates Thalassemia Society has always initiated in every step of benefiting towards the well being of its Thalassemia patients & spreading awareness amongst the community members through social, cultural & medical aspects.

Hemoglobal

Hemoglobal® began on the island of Sri Lanka following years of work in research and care of children in thalassemia, which is the most common blood disorder in Asia. Governed by the conviction that country of birth or family income should not determine the life or death of a child, Dr. Nancy Olivieri and Professor David Weatherall founded Hemoglobal® to help provide children in Asia with improved care to preserve their lives, and quality of life.

NHS Sickle Cell & Thalassaemia Screening Progamme

Our goal is to develop a linked programme of high quality screening and care in order to: •Support people to make informed choices during pregnancy and before conception. •Improve infant health through prompt identification of affected babies. •Provide high quality and accessible care throughout England. •Promote greater understanding and awareness of the disorders and the value of screening.

Thalassaemia Society of Pakistan

The Society was established in 1994 and is an organization of volunteers from all walks of life, who have dedicated themselves to achieve the following goals: 1) Provide the best care and treatment for children with Thalassaemia 2) Create awareness about Thalassaemia 3) Prevention through prenatal diagnosis.

Thalassemia and Sickle Cell Australia

TASCA puts great effort towards raising public awareness of genetic haemoglobin disorders including thalassaemia and sickle cell disease.

Thalassemia Foundation of Canada

The Mission of the Thalassemia Foundation of Canada is to support and fund thalassemia scientific research, treatment, patient services, public awareness and education. Established in 1982, originally began as a small support group for parents and patients.

Thalassemics India

Established in 1986, Thalassemics India was conceived to check and help deal with Thalassemia. A non-governmental organization, Thalassemics India is working zealously across the country, operating in close association with doctors, drug/equipment companies throughout the country and abroad, hospitals, Thalassemia associations & thalassemia centers.

United Kingdom Thalassaemia Society

To be the definitive source of information, education and research for those affected by or working with thalassaemia. The research into a new drug, "Deferiprone", an oral chelator, was funded by the Society outside of the pharmaceutical industry and is now being used in the treatment of thalassaemia.

Blood Disorders

Thalassemia is derived from the Greek word “thalassa” meaning “the sea” because the condition was first described in populations living near the Mediterranean Sea. However, it is now very well known that alpha- and beta-thalassemia are the most common inherited single-gene disorders in the world with the highest prevalence in areas where malaria was or still is endemic...

NHS

It's not known exactly what causes the genetic mutations associated with thalassaemia. However, it's likely they've survived because carriers of the condition (both alpha and beta thalassaemia) are protected against malaria.

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