June 2017 Sororya Beacher, Oscar Netherlands

As chairman of the sickle cell organization in the Netherlands, a trained ICU nurse, and nurse tutor this has given me many opportunities to help with giving information to both nurses and doctors. In some countries, sickle-cell disease and thalassemia are not seen anymore as a rare disease. In many others, these conditions are still rare, and to understand not only the patients but also the treatment that is available is not simple. There are still many patients that do not receive holistic treatment, involving a multidisciplinary team.

People with disabilities are capable of achieving great things in life, knowledging and understanding of our (dis)abilities is the key. To enhance opportunities for international collaboration the ICF is the tool.

The ICF-form as designed for a personal health record, specified for people with Sickle Cel Disease or Beta Thalassamia, can be downloaded below.

Last modified
21 July 2021
Rare Condition

Sickle Cell Disease

Sickle cell disease (SCD) is a red blood cell disease, a complex inherited disorder with multisystem manifestations that requires specialized comprehensive care to achieve an optimal...

Thalassemia major or Beta Thalassemia

The thalassemias are a group of genetically (inherited) blood disorders that share in common one feature; the defective production of hemoglobin which is the protein...

More info
http://www.oscarnederland.nl/over-oscar-nederland/ http://thalassaemia.org.cy/