National Coordinating and Evaluation Center
Online Resources in Other Languages Print

Hemoglobinopathy Resources in Other Languages


Resources in French – L’Anémie Falciforme OR Drépanocytose

SantéOntario.com: Ontario (Canada) Government Health Website

http://www.health.gov.on.ca/fr/
  • 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://scinfo.org/additional-online-books-and-articles/brazil-sickle-cell-guide-patients

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 .
 

Welcome to the website of the National Coordinating and Evaluation Center- SCDAA for the Sickle Cell Disease Newborn Screening Program. Please take a moment to read the following statement regarding policy, confidentiality, and disclaimers. Once you click your acceptance below, you will be free to navigate throughout the site. Thank you for your cooperation, and enjoy your visit!

TERMS AND CONDITIONS OF USE OF SICKLECELLDISEASE.NET

AGREEMENT

BY ENTERING THE NCEC-SCDAA SITE, YOU ACKNOWLEDGE AND AGREE THAT YOU HAVE READ AND UNDERSTAND THESE TERMS AND CONDITIONS OF USE OF SICKLECELLDISEASE.NET, THAT THE PROVISIONS, DISCLOSURES AND DISCLAIMERS SET FORTH BELOW ARE FAIR AND REASONABLE, AND THAT YOUR AGREEMENT TO FOLLOW AND BE BOUND BY THEM IS VOLUNTARY AND IS NOT THE RESULT OF FRAUD, DURESS OR UNDUE INFLUENCE EXERCISED UPON YOU BY ANY PERSON OR ENTITY. YOU ALSO AGREE TO HOLD NCEC AND ITS GRANTEES, AND EACH OF THEIR OFFICERS, DIRECTORS, MEMBERS, AND AGENTS HARMLESS FROM ANY CLAIM, COMPLAINT OR DAMAGE ARISING OUT OF OR IN CONNECTION WITH YOUR USE OF THE SITE.

SUMMARY OF IMPORTANT LEGAL INFORMATION

The sicklecelldisease.net website (the "Site") is produced for the National Coordinating and Evaluation Center (NCEC) -SCDAA, the grantees participating in the Sickle Cell Disease Newborn Screening Program and their partners. All use of the Site is subject to the Terms and Conditions set forth below. By entering and using the Site, you acknowledge that you have read and understood such Terms and Conditions and that you agree to abide by them. The Site is designed for informational and educational purposes only. NCEC does not endorse, guarantee, warrant, or recommend any products or services discussed or advertised on the Site or linked from the Site. The NCEC-SCDAA retains all copyrights and other proprietary rights in or relating to any content, including any software or educational materials, provided on the Site. You may download and print a small number of copies of the content for scientific or educational uses. You may not sell, transfer, reproduce, transmit, distribute, perform or display such content for any commercial purpose without the express consent of the NCEC-SCDAA.

PRIVACY POLICY NCEC-SCDAA provides the following privacy policy (the "Privacy Policy") in order to demonstrate our firm commitment to privacy. The Privacy Policy may be amended from time to time. The NCEC home page will indicate the date that the Privacy Policy was most recently updated.

a. Collection of Personal Information. NCEC -SCDAA may ask for information about our users at the point of downloading educational materials. This information tells us about the types of people (e.g., providers vs. patients, grantees vs. nongrantees) who use the Site and helps us in the development of materials for our grantees and their clients.

b. Use of Personally Identifiable Information. NCEC-SCDAA will not sell or otherwise transfer or disclose personally identifiable information to third parties without the user's prior consent except as may be required by federal, state or local law, or by exigent circumstances. NCEC-SCDAA also may use your profile information on an aggregate basis -- without personal identifiers -- to develop and display new features and content for the Site, and to provide others with aggregate information about our users and the usage patterns of the Site. NCEC-SCDAA also may perform statistical analyses of user behavior (on a de-identified aggregate basis) in order to measure interest in and use of the various areas of the Site.

c. Retention of User Information. It is not possible for a user to delete his or her profile from our database, nor is it feasible to delete all traces of a user's activity in the system. Messages posted to a forum are examples of user activities that are not feasible to delete.

d. Voluntary Disclosure of Personally Identifiable Information on Forum Boards. Users should be aware that when they voluntarily disclose personally identifiable information (for example user name, email address) on an Interactive Area of the Site, that information, along with any substantive information disclosed in the user's communication, can be collected and correlated and used by third parties and may result in unsolicited messages from third parties. Such activities are beyond the control of the NCEC and the NCEC is not responsible for the discoverability of any user's identify by methods beyond our control.

e. Cookie Technology. NCEC collects non-personal identification information through the use of "cookie" technology and/or Internet Protocol ("IP") address tracking. Cookies are small text files a website can use to recognize repeat users and facilitate the user's ongoing access to and use of the site. Non-personal identification information might include the browser used by the user, the type of computer, the operating systems, the Internet service providers and other similar information. The NCEC system also automatically gathers information about the areas the user visits on the Site and about the links the user may select from within the Site to other sites. NCEC cannot control the use of cookies by advertisers or third parties displaying data on the Site or whose sites a user visits or links to from the Site. Most browsers are set to accept cookies. You can set yours to refuse cookies, or to alert you when cookies are being sent.

f. Links to other sites. The Site contains links to third party websites. These links are provided solely as a convenience to users and not as a guarantee, warranty, or recommendation by NCEC of the content on such third-party websites or as an indication of any affiliation, sponsorship or endorsement of such third party websites. NCEC is not responsible for the content of linked third-party sites and does not make any representations regarding the privacy practices of, or the content or accuracy of materials on, such third-party websites. If you decide to access linked third-party websites, you do so at your own risk. Your use of third-party websites is subject to the terms of use for such sites.

g. Security of Information. NCEC is committed to keeping user information secure, and uses industry standard technology in an attempt to achieve that goal.

h. Parental Permission. NCEC does not intend that children will use the Site. Some of the information available on the Site may not be appropriate for children. USERS UNDER 18 YEARS OF AGE MUST OBTAIN PARENTAL PERMISSION TO USE THE SITE. Adults should not assist unauthorized children to access the Site. NCEC will not knowingly collect, use or disclose personally identifiable information about visitors under 18 years of age.

     

For security reasons,
you must accept the Term and Conditions of SICKLECELLDISEASE.NET
in order to be able to navigate throughout the site.
Thank you.
Disclaimer
Home