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World Wide Resources Organizations and Clinics

World Wide Web Sites

Disclaimer: The following links are provided as a service to our users. This link does not imply endorsement or support of any programs or organizations. The Sickle Cell Information Center sponsors are not responsible for the content of the individual organization home pages. Click on a category below or scroll down:

Health Care Providers,  Patients and Families, Kid Friendly, Organizations, New Born Screening - Genetics, Teachers and Students, Bone Marrow Transplant, Cord Blood - Stem Cell, Incidence and distribution,  Pain Management, Stroke prevention - Transfusion, Other medical sites

Sickle Cell Organization - Clinic Web Sites

Sickle Cell Disease Association of America (SCDAA)- http://www.sicklecelldisease.org/  This is a the home page for the national organization of Sickle Cell Disease Association of America, Inc representing the many community sickle cell organizations across the nation. There is a list of educational materials for purchase and news 

 Sickle Cell Disease and Newborn Screening Program http://www.sicklecelldisease.net/ - The Sickle Cell Disease and Newborn Screening Program is comprised of 15 HRSA funded community based sickle cell disease (SCD) projects and the SCDAA-National Coordinating and Evaluation Center project (NCEC). The community –based SCD projects partner with State newborn screening programs, comprehensive sickle cell treatment centers, and health care professionals to provide support to infants screened positive for SCD and trait and their families. 

CITIZENS FOR QUALITY SICKLE CELL CARE at http://www.cqscc.org/ To ensure the availability and accessibility of quality and comprehensive medical care and support services for children and adults in Northern Connecticut with Sickle Cell Disease and other related
disorders. 

The Florence Neal Cooper Smith  Sickle Cell Initiative at  http://www.angelfire.com/ex/sicklecellanemia/   The Sickle Cell Initiative is a program of the Medical College of Virginia (MCV) Foundation whose ultimate goal is to raise money for aggressive, cutting edge research to eventually lead to a cure for sickle cell disease.

Updated Comprehensive Sickle Cell Centers Web site at http://www.sicklecell-info.org/index.html

  The Medical College of Georgia - Sickle Cell Clinic and Outreach Clinics in Augusta- Heath maintenance clinics for adults and children website: http://www.mcg.edu/centers/sicklecell/Index.htm

Children's Healthcare of Atlanta (CHOA) Sickle Cell Disease Program     http://www.choa.org/default.aspx?id=2365  Bone Marrow transplantation for sickle cell disease in Atlanta http://www.choa.org/default.aspx?id=739

Global Sickle Cell Forum at http://www.sicklecellforum.org

We are inviting you to share your unique insights and experience on a new web resource devoted to the management of sickle cell disease in pediatric patients.
A recurring topic of discussion has been the need for a web-based resource focused on pediatric sickle cell disease, similar to the website that currently exists for adult patients. Thanks to an educational grant provided by Novartis to fund initial startup, we are pleased to announce the launch of the Global Sickle Cell Forum.

Global Sickle Cell Forum ( www.sicklecellforum.org ) is a dynamic interactive web forum where you can participate in online discussions with colleagues from all over the world and share information about important disease management issues:

-Submit and discuss challenging patient cases
-Share insights about diagnosis guidelines, treatment options, and patient management strategies
-Upload and download slide presentations or study data
-Post information about clinical trials, research opportunities, and relevant medical meetings
-Initiate discussions or request feedback on any other related issues

You can read the posts and access the educational materials that appear on Global Sickle Cell Forum, but if you wish to post responses or contribute content you must first register and create a free user profile.

The content for this site will be physician driven and maintained. Therefore, we are asking if you would kindly contribute some initial content to help build the knowledge base. Feel free to provide your slide presentations, links to relevant articles you have published, or clinical trials updates. Submitting a topic for general discussion or sharing your professional observations about a particular issue to stimulate a lively dialogue would also be helpful and appreciated.
To add content, simply go to www.sicklecellforum.org and create your user profile. Then click the appropriate topic heading and submit your comment, discussion question, or supplemental materials. Current topics are shown below, and additional topics will be created as needed:

General Discussion
Upload/View Slides
Clinical Trials
Standard of Care Guidelines
Research Opportunities
Upcoming Medical Meetings
Challenging Patient Cases

Sickle cell disease can be very discouraging and distressing for both patient and clinician. By sharing our unique insights, expertise, and professional experiences on Global Sickle Cell Forum, we can all increase our understanding of this complex disease and immediately incorporate this knowledge into improved management strategies for our pediatric patients. We also encourage you to tell your colleagues about this important resource.
Thank you very much for your participation.

Sincerely,
Kwaku Ohene-Frempong, MD Co-Chair 
Elliott P. Vichinsky, MD Co-Chair

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The European School of Haematology (ESH)  The Curriculum in Iron Metabolism and Related Disorders
Now available : Course 1 End-organ Damage Resulting from Accumulation of Iron in Cells
Presented by Pierre Brissot, MD : http://www.ironcurriculum.esh.org/ 

An online educational course with the following objectives:

• Assess the molecular physiology of iron metabolism and the factors contributing to its pathophysiology and resultant iron overload, based on an understanding of hepcidin, ferroportin, transferrin, NTBI, LPI, transfusional iron overload, and genetic iron overload.
  
• Identify the spectrum of disease states associated with iron overload, both primary and secondary, and the clinical sequelae resulting from iron overload on the main visceral targets of iron excess (hepatic, cardiac, endocrine organs, skeletal system) as well as morbidity and mortality.

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Achieving Balance in Federal and State Pain Policy: A Guide to Evaluation (Fourth edition), and w Achieving Balance in State Pain Policy: A Progress Report Card (Third edition)
The new edition of the Evaluation Guide is the fourth in a series of evaluations of federal and state pain policies. The Progress Report Card quantifies state pain policies, and benchmarks progress to promote pain management and reduce policy barriers by comparing 2007 state policy grades with those from 2000, 2003, and 2006. These tools can be used by government and non-government organizations, as well as policy-makers, healthcare professionals, and advocates to understand the policies in their state that reinforce the right to pain management, or that can hinder patient access to effective treatment.

To view or download these reports, as well as a national press release, Frequently Asked Questions, and a summary of grade changes, visit the PPSG website at http://www.painpolicy.wisc.edu

Stem Cell Transplant Review by CIGNA Insurance Company at http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0464_coveragepositioncriteria_stem_cell_transplant_sickle_cell_disease.pdf

  List of US and International Clinics

            Medicine Net -  http://www.medicinenet.com/sickle_cell/index.htm

            CDC Sickle Cell page http://www.cdc.gov/ncbddd/sicklecell/

            CDC - Sickle cell trait facts http://www.cdc.gov/ncbddd/sicklecell/faq_traits.htm

  NIH  Request for Applications for Research Grants at http://www.nhlbi.nih.gov/funding/inits/index.htm

  Medical College of Georgia Stroke Prevention Program STOP study - This is the headquarters of the stroke prevention study that demonstrated a new method - Trans-cranial doppler ultrasound , to detect sickle cell children at risk for strokes. Links and contacts for all the participating centers are available.

The NIH Comprehensive Sickle Cell Centers - Statistical Coordination Web Site at http://www.rhofed.com/sickle/ This is a new site with information on the 10 NIH funded comprehensive sickle cell centers in the US. There are links to other sickle cell sites.

 

 The Sickle Cell Foundation of Georgia  at http://www.sicklecellatlaga.org/ - This is the web site for our web partners with testing information, Georgia news, and events in and around Atlanta

  Harvard Sickle Cell Program at http://sickle.bwh.harvard.edu/

  Howard University Sickle Cell Center in Washington DC at http://www.huhosp.org/sicklecell/index.htm

Sickle Cell Disease Association of Texas-Gulf Coast- http://www.sicklecell-texas.org/ This is a the home page for the Texas community group listing services to the Gulf Coast region of Texas

  South Alaama Sickle Cell Center in Mobile. AL http://www.southalabama.edu/usahealthsystem/sicklecell/

  Comprehensive Sickle Cell Center at Children's Hospital Medical Center of Cincinnati at http://www.cincinnatichildrens.org/Services/Programs_And_Services/Sickle_Cell_Center/default.htm

  The American Sickle Cell Anemia Association Web at http://www.ascaa.org/ - This site originates out of Cleveland Ohio, and lists local and national resources.

  THE PSYCHOLOGY WEBSITE OF SICKLE CENTRAL
The Brent Sickle Cell and Thalassaemia Centre  at http://www.sickle-psychology.com/

  State of New Jersey Sickle Cell Help  site at http://www.state.nj.us/health/fhs/sicklecell/familyguide/

  Sickle Cell Anemia Association of Austin - Marc Thomas Chapter http://www.tdh.state.tx.us/newborn/austin_sc.htm

The Sickle Cell Disease Association of San Diego at http://www.scdaa-sd.org/

  Brussels Red Blood Cell  Sickle Cell Information http://erasmeinfo.ulb.ac.be/globule/English/sickle.htm Information in French and English about sickle cell disease and other anemias from Erasme University Hospital - Brussels Belgium

  The Jamaican Sickle Cell Unit and Medical Research Council at http://mrcjamaica.nimr.mrc.ac.uk/ This is a well organized web site , full of information and articles from the MRC Sickle Cell Center in Jamaica. This site may be down at times, so try back again, it is worth the visit.

  Sickle Cell Advocates for Research and Empowerment (S. C.A. R.E. ) http://www.defiers.com/  In 1997 Deborah and Ivor Pannell formed Sickle  Cell Advocates for Research and Empowerment (S. C. A. R. E. ) whose primary  aim is to equip the sickle cell community with up-to-date information that  encourages advocacy and self-empowerment. The site includes everything from 
"Research News" to  to the personal experiences of "BloodSongs," as well as a comprehensive listing of links.

  United Kingdom Sickle Cell Website - Clinics and Information - This is a comprehensive site detailing sickle cell services in the U.K.

  The Sickle Cell Society in London UK - This is an excellent site with education, news and services in London. at http://www.sicklecellsociety.org/index.htm

  Pediatric Hematology Center in Memphis TN - Sickle Cell Program at St. Jude Children's Hospital and The Pediatric Hematology Center of Memphis, TN website http://www.stjude.org/phecom

       The Sickle Cell Disease Association of California - http://www.scdfc.org/

  Sickle Cell Disease Association of the Piedmont (SCDAP) http://www.scdap.org/ a good site for information and services for sickle cell patients in the Greensboro, North Carolina area

  STAC website for counsellors and other professionals involved in providing a service for those "at risk" of sickle cell, thalassaemia and related conditions. at  http://www.stacuk.org/

   TASC, the Unit for the Social Study of Thalassaemia and Sickle Cell based in Leicester in the United Kingdom. at http://www.tascunit.com/

    American Pain Foundation 201 N. Charles St., Suite 710 Baltimore, MD 21201-4111 ph: 410-783-7292  fax: 410-385-1832 www.painfoundation.org

  American Society of Pediatric Hematology/Oncology at http://www.aspho.org/

   Sickle Cell Disease Association Of Illinois  http://www.sicklecelldisease-il.org/

  Sickle Cell Disease Association of America/Connecticut Chapter http://www.sicklecellct.org/

    The Diggs Kraus Sickle Cell Center at The MED in Memphis TN (901) 545-8535  http://www.the-med.org/sickle.html

  Agency for Health Care Policy and Research (AHCPR) Monographs

  World Health Organization (WHO)

 

  American Red Cross

  American Association of Blood Banks

 

  American Medical Association

  American College of Physicians (ACP)

  Emory MedWeb Medical Resources

  Quackwatch - Combating health fraud and myths

  Tufts University Nutrition Navigator

  U.S. Food and Drug Administration (FDA)

  University of Iowa -Virtual Hospital

  Alliance of Genetic Support Groups

 American Academy of Pediatrics

  Dr. Koop's Medical Community

  Starbright Foundation - for children and teens

  Grady Health System - home of the Georgia Comprehensive Sickle Cell Center

Send mail to aplatt@emory.edu with questions or comments about this web site.
Copyright © 1997 Sickle Cell Information Center
Last modified: November 16, 2007