Online Resources in Other Languages

Hemoglobinopathy Resources in Other Languages


Resources in French – L’Anémie Falciforme OR Drépanocytose

SantéOntario.com: Ontario (Canada) Government Health Website

https://santeontario.com/conditiondetails.aspx?disease_id=281

  • Provides a relatively comprehensive overview of the condition, causes, genetics, symptoms and treatment.  Lots of text, and not written at a public health-friendly level, but certainly an accurate and informative resource.

  • Most of the other resources online, including those from both Canada and France, are based on this site, and include almost exactly the same information.


Association d’Anémie  Falciforme du Québec

http://www.anemie-falciforme.org/

  • Information and support resources for individuals with Sickle Cell Disease in Quebec (Canada).

  • Provides brief descriptions of each of the medical and psychosocial problems associated with SCD (e.g., growth delay, school absenteeism, etc.), and includes statistics, some discussion of genetics and inheritance, and when to see a doctor/go to the ER

  • Also provides links to some multimedia presentations, such as PowerPoint slides, and a comic strip for children.


Drépa-Gabon: Gabon (West Central Africa)-based organization, dedicated to the awareness and prevention of SCD

http://www.drepagabon.org/maladie.htm
  • This site contains a lot of information about the etiology /genetics of SCD, symptoms, prevention of pain crises, treatments, and a discussion of the current status of research on new treatments.  This information is cited (often from the NIH), so it is likely accurate; however, most of the citations are from the 1990s, so it’s possible that this site has not been updated in quite some time.
  • In particular, this site offers information about different regions of Africa, and where the risk for SCD (i.e., SCT prevalence) is greatest.

Association pour l’Information et la Prévention de la Drépanocytose

http://asso.orpha.net/APIPD/
  • National support organization for SCD in France
  • Provides the most detailed patient information about SCD of any site I found, with focus not just on the symptoms/etiology of the condition, but also how/when to seek treatment, and what kind of health surveillance is recommended
  • Not written at a grade 6 level French.

Resources in Portuguese – Anemia Falciforme

http://www.scinfo.org/Brazilppt/BrazilPatientInfo.htm
  • Link from The Georgia Comprehensive Sickle Cell Center Website:
    http://www.scinfo.org/webspanish.htm  
  • There is quite a bit of information included, and there are pictures and diagrams as well.

Resources in Italian – Anemia Drepanocitica

Italian Organization (“Blod”), devoted to prevention, cure, and research of thalassemias

http://www.blod.info/it/approfondimenti/anemia-drepanocitica.asp

  • Includes autosomal recessive diagrams, and some pictures of sickle cells.

  • Appears to be patient friendly and use relatively simple Italian.  It is not too text heavy.

  • Contains sections on all the types of thalassemias, in addition to an overview of blood and haemoglobin, and screening strategies.


L’Ambulatorio Pediatrico

http://web.tiscalinet.it/ambupedy/drepanocitosi.htm
  • This site seems to be aimed at parents, and contains information about child development and child care, in general.
  • The section on SCD is just a single page, but gives an overview of the different kinds of thalassemia, where in Italy the prevalence is greatest, symptoms, diagnosis, and treatment (briefly).

Resources in Dutch/Flemish – Sikkelcelziekte

http://www.ikhebsikkelcel.nl/page.php?id=1

  • SCD site for children and teens. Contains lots of pictures, videos, and interactive parts. Very bright!

  • http://www.erfelijkheid.nl/sikkelcel.php

  • A very basic flash film about SCD, with information about blood/haemoglobin, and inheritance.

  • http://www.oscarnederland.nl/Sikkelcelziekte-home

  • A lot of information packed into this site, and it is professionally maintained

  • http://www.amc.nl/index.cfm?sid=1367

  • This page has translation options in English, French, and Dutch. It contains a lot of information, with separate sections for parents (focusing on child care) and for the family (focusing on inheritance and screening).

  • The parent section is very detailed, with sections on each major symptom, close to 20 types of therapy/medications, and many topics under “Living with SCD”


Resources in German – Sichelzellanamie

http://www.netdoktor.at/krankheiten/fakta/sichelzellanaemie.htm
  • Appears to be a German WebMD site. Contains a fair bit of information.
  • http://www.haemoglobin.uni-bonn.de/
  • Site is based out of a university. There are two main links from the site: to an information page for patients with SCD (and their parents) and an information page for caregivers/physicians of people with SCD. Both contain a lot of information.
  • The patient page has pictures and inheritance diagrams.
  • The physician page has differential diagnoses, surveillance recommendations, and even drug prescription guidelines.

WHO Fact Sheets

Arabic: http://www.who.int/mediacentre/factsheets/fs308/ar/index.html

Chinese: http://www.who.int/mediacentre/factsheets/fs308/zh/index.html

Russian: http://www.who.int/mediacentre/factsheets/fs308/ru/index.html


Washington State Department of Health - Information on Hemoglobinopathies

http://www5.doh.wa.gov/EHSPHL/PHL/Newborn/reports.htm

  • This site contains a series of pamphlets about SCD and other Hemoglobinopathies translated into several languages including Cambodian, Chinese, Laotian, Somali, Spanish, and Vietnamese

For a printable copy of this information click here .