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Sickle Cell News Round-Up

Sickle Cell News for April 2011


NIH Launches Web Resource On Complementary And Alternative Medicine
Evidence-based information for health care providers
A new online resource, designed to give health care providers easy access to evidence-based information on complementary and alternative medicine (CAM), was unveiled today by the National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health. With this new resource, providers will have the tools necessary to learn about the various CAM practices and products and be better able to discuss the safety and effectiveness of complementary and alternative medicine with their patients.
The portal on the NCCAM website at is tailored to fit the needs of all health care providers, including physicians, nurses and nurse practitioners, physician assistants, and CAM providers. It includes information on the safety and efficacy of a range of common health practices that lie outside of mainstream medicine -- natural products, such as dietary supplements, herbs, and probiotics, as well as mind-body practices such as meditation, chiropractic, acupuncture, and massage.
This resource was developed based on a series of NCCAM-sponsored focus groups where health care providers identified the need for an evidence-based, one-stop place to help answer their patients' questions on CAM. With this need in mind, NCCAM developed a resource that provides reliable, objective, and evidenced-based information on CAM, including:
-- links to relevant clinical practice guidelines
-- safety and effectiveness information
-- links to systematic reviews
-- summaries of research studies
-- scientific literature searches
-- programs for continuing education credit
-- patient fact sheets
-- NCCAM's Time to Talk tool kit on communicating about CAM.
Americans annually spend nearly $34 billion out-of-pocket on CAM products and practices. Surveys show that nearly 40 percent of American adults and 12 percent of American children use some form of CAM. Other surveys show that patients do not regularly discuss these practices with their health care providers. In fact, a recent study of Americans aged 50 and older found that overall two-thirds of respondents had not discussed CAM with their health care provider.
"NCCAM is charged to study and provide evidence-based information on the safety and efficacy of CAM health practices that are readily available and already used by a great number of people," said Josephine P. Briggs, M.D., director of NCCAM. "As a physician, I understand the need to have easily accessible and accurate information on all health practices. This Web resource is a way for NCCAM to share this valuable information with all providers."To use this resource, please visit .
NCCAM's Time to Talk campaign encourages patients to tell their providers about CAM use and providers to ask about it by offering tools and resources-such as wallet cards, posters, and tip sheets -- all of which are available for free at .
The mission of the National Center for Complementary and Alternative Medicine (NCCAM) is to define, through rigorous scientific investigation, the usefulness and safety of complementary and alternative medicine (CAM) interventions and their roles in improving health and health care. For additional information, call NCCAM's Clearinghouse toll free at 1-888-644-6226, or visit the NCCAM Web site at
New Website for Sickle Cell Teens for Transition
The Sickle Cell Center at Children’s National Medical Center in Washington DC under the leadership of Dr. Lewis Hsu and Robert Sheppard Nickel, MD third year pediatric resident have developed a new website to improve transition from pediatric to adult care for adolescents with sickle cell disease. (
Dr Nickel states: “We are working to get the word out about this site and further improve it. To help accomplish these goals we are hosting a national contest for individuals to submit art, poetry, video, etc. with an educational message to be uploaded and featured on the website.” Click on : Teen Sickle Cell Website Contest: Submit an original video, poem, essay, story, song, or piece of artwork dealing with a topic on the STEP website for a chance to win $150 through May 31st.

Analysis Of Opioid Prescription Practices Finds Areas Of Concern
NIH report could lead to improved strategies for pain management
An analysis of national prescribing patterns shows that more than half of patients who received an opioid prescription in 2009 had filled another opioid prescription within the previous 30 days. This report also suggested potential opportunities for intervention aimed at reducing abuse of prescription opioids.
Researchers from the National Institute on Drug Abuse (NIDA), a component of the National Institutes of Health, will publish results of this analysis in this week's Journal of the American Medical Association (JAMA).
"More research is needed to see if current practices are working, with a closer look at why so many patients are getting multiple prescriptions within a short period of time," said NIDA Director Nora D. Volkow, M.D. "As a nation, it is important that we all become better informed about effective pain management and the risks of abusing prescription painkillers."
This analysis comes on the heels of a nearly 20 year increase in the use of prescription painkillers. From 1991 to 2009, prescriptions for opioid analgesics increased almost threefold, to over 200 million. According to the Drug Abuse Warning Network system, which monitors drug-related emergency department visits and drug-related deaths, emergency room visits related to the nonmedical use of pharmaceutical opioids has doubled between 2005 and 2009. While these medications are crucial for pain management, their wide availability may also result in leftover pills in family medicine cabinets, increasing opportunities for abuse, as well as a host of serious medical consequences, including addiction. Most abusers report getting these medications from friends and relatives who had been prescribed opioids, or they are abusing their own medications.
This study used data from SDI's Vector One National database, a privately owned national-level prescription and patient tracking service. The sample included 79.5 million prescriptions dispensed in the United States during 2009, which represent almost 40 percent of all the opioid prescriptions filled nationwide. They broke down the prescriptions by physician specialty, patient's age, duration of prescription, and whether or not the patient had previously filled a prescription for an opioid analgesic within the past 30 days. The researchers looked at prescribing practices for younger patients, who are more at risk than older adults for opioid abuse and later addiction.
The records show that approximately 56 percent of painkiller prescriptions were given to patients who had filled another prescription for pain from the same or different providers within the past month. In addition, nearly 12 percent of opioids prescribed were to young people aged 10-29. Most of these were hydrocodone- and oxycodone-containing products, like Vicodin and Oxycontin. Dentists were the main prescribers for youth aged 10-19 years old. Nearly 46 percent of opioid prescriptions were given to patients between ages 40 and 59, and most of those were from primary care providers.
The current issue of JAMA also includes an accompanying commentary from Dr. Volkow and Dr. Thomas McLellan of the University of Pennsylvania School of Medicine. They point out that according to the Centers for Disease Control and Prevention, prescription opioid overdose is now the second leading cause of accidental death in the United States, killing more people than heroin and cocaine combined. They also state that this is compelling evidence for the need to develop smart strategies to curtail abuse of opioid analgesics, without jeopardizing pain treatment.
The analysis can inform policy makers wanting to implement systems to reduce opioid abuse. Already many states are looking at prescription drug monitoring programs that will give physicians access to information on prescriptions previously received by their patients.
The research letter and commentary can be found online beginning April 6 at . For the NIDAMED website, "Resources for Medical and Health Professionals," go to .

Washington Wizzard Fans Offer Life-saving Donations

The Verizon Center bustled with energy Saturday morning, more than 10 hours before the Wizards’ home game against the Atlanta Hawks. Individuals arrived at the arena as early as 7 a.m. and the flow remained steady well into the early afternoon.

Free Wizards t-shirts and game tickets appeared to be the attraction, but it was the Wizards’ partnership with Inova Blood Donor Services that made the difference. The event, held on Sat., April 9, aimed to raise awareness of the need for blood donations among African Americans in the Washington Metro area.

New Internet Based Course on Sickle Cell Disease Launched in Monaco.

On Wednesday March 30, 2011 a new internet based course on sickle cell disease was launched by the Virtual Medical University of Monaco. This initiative was the culmination of the interests of HRH The Princess of Hanover, (daughter of HSH The Princess Grace of Monaco) who, as President of L’Association Mondiale des Amis de l'Enfance (AMADE), had recognized the importance of sickle cell disease during her visits to developing countries especially in Africa. The course was coordinated by Professor Graham Serjeant (Kingston, Jamaica) and includes contributions from experts from 16 countries. It is in a multimedia format with 15 basic modules, 25 interviews with experts, and multiple choice questions for a package of 25 hours of instruction and is available in both English and French. Further details are available from the website

New WHO policy guidelines now available!

The Pain & Policy Studies Group is pleased to share the news that the Access to Opioid Medications in Europe (ATOME) project has recently released an updated WHO Policy Guidelines document. Titled “Ensuring Balance in National Policies on Controlled Substances, Guidance for Availability and Accessibility of Controlled Medicines,” the guidelines are expanded to encompass all controlled medicines, with a focus on essential medicines. An update of the WHO 2000 Guidelines “Achieving Balance in National Opioids Control Policy,” they also expand beyond pain treatment to include treatment of opioid dependence, emergency obstetrics, psychiatry, and neurology. Endorsed by the International Narcotics Control Board, the guidelines include a Country Assessment Checklist whose purpose is to enable governments to systematically identify and address policy barriers so as to make controlled medicines more readily available and accessible.This document can be found at:

New Resources
Third Edition of Hope and Destiny, The Patient and Parent’s Guide to Sickle Cell Disease and Sickle Cell Trait is now available

Emory School of Medicine Professor of Hematology/Oncology James Eckman MD and Physician Assistant Faculty Allan Platt, PA-C have spent over 30 years educating clinicians, patients and families about sickle cell disease, one of the most common genetic blood disorders in the US,. With the help of Lewis Hsu, PhD, MD, Director of the Pediatric Sickle Cell Program at Children’s National Medical Center in Washington, DC, they have co-authored the third edition of the bestselling sickle cell lay reference book Hope and Destiny, The Patient and Parent’s Guide to Sickle Cell Disease and Sickle Cell Trait. According to Hilton Hudson, MD, CEO of Hilton publishing, over 250,000 copies have been distributed worldwide since its first release in 2004 and it is the companies best non-bulk seller. Hilton publishing focus is lay health education books for minorities. The new edition has the latest in research, treatments and prevention. Over the last decade, there has been an explosion of new therapies to prevent the complications, prolong life and even cure several patients with bone marrow transplants. The future of gene therapy is discussed by Betty Pace MD from UT Southwestern Medical Center. There is a book forward by Tionne “T-Boz” Watkins, singer and actress living with sickle cell disease.

Sickle Cell disease is a genetic blood disorder that affects over 80,000 people in the US and millions worldwide. Dr Eckman is the medical director and founder of the Comprehensive Sickle Cell Center at Grady Heath System, the world’s first and longest functioning 24 hour clinic. Allan Platt PA-C was the center coordinator for 20 years and is currently full time faculty at the Emory PA program. Dr Hsu was pediatric hematologist at the Grady center for several years and now directs the sickle cell program at Children’s National Medical Center in Washington DC.The co-authors also maintain an educational website: The Sickle Cell Information Center at and monthly email research newsletter with over 4,500 readers worldwide. Available at

Video Suffering in Silence: 100 Years of Sickle Cell Disease in the U.S by Carlton Haywood Jr., Ph.D., M.A.,
Sickle Cell Articles

Translating scientific advances to improved outcomes for children with sickle cell disease: a timely opportunity.

Raphael JL, Kavanagh PL, Wang CJ, Mueller BU, Zuckerman B.

Pediatr Blood Cancer. 2011 Jul 1;56(7):1005-8. doi: 10.1002/pbc.23059. Epub 2011 Feb 22.

PMID: 21488152 [PubMed - in process]

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Standard clinical practice underestimates the role and significance of erythropoietin deficiency in sickle cell disease.

Saraf S, Farooqui M, Infusino G, Oza B, Sidhwani S, Gowhari M, Vara S, Gao W, Krauz L, Lavelle D, Desimone J, Molokie R, Saunthararajah Y.

Br J Haematol. 2011 May;153(3):386-92. doi: 10.1111/j.1365-2141.2010.08479.x. Epub 2011 Mar 21.

PMID: 21418176 [PubMed - in process]

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Vitamin D deficiency and chronic pain in sickle cell disease.

Osunkwo I, Hodgman EI, Cherry K, Dampier C, Eckman J, Ziegler TR, Ofori-Acquah S, Tangpricha V.

Br J Haematol. 2011 May;153(4):538-40. doi: 10.1111/j.1365-2141.2010.08458.x. Epub 2011 Jan 31. No abstract available.

PMID: 21275953 [PubMed - in process]

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Hydroxyurea for sickle cell anemia: what have we learned and what questions still remain?

McGann PT, Ware RE.

Curr Opin Hematol. 2011 May;18(3):158-65.

PMID: 21372708 [PubMed - in process]

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Endothelium-dependent and endothelium-independent vasodilatation of the cutaneous circulation in sickle cell disease.

Mohan JS, Lip GY, Blann AD, Bareford D, Marshall JM.

Eur J Clin Invest. 2011 May;41(5):546-51. doi: 10.1111/j.1365-2362.2010.02444.x. Epub 2010 Dec 15.

PMID: 21158851 [PubMed - in process]

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A video-intervention to improve clinician attitudes toward patients with sickle cell disease: the results of a randomized experiment.

Haywood C Jr, Lanzkron S, Hughes MT, Brown R, Massa M, Ratanawongsa N, Beach MC.

J Gen Intern Med. 2011 May;26(5):518-23. Epub 2010 Dec 23.

PMID: 21181560 [PubMed - in process]

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Differences in health-related quality of life in children with sickle cell disease receiving hydroxyurea.

Thornburg CD, Calatroni A, Panepinto JA.

J Pediatr Hematol Oncol. 2011 May;33(4):251-4.

PMID: 21516020 [PubMed - in process]

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The impact of parenteral narcotic choice in the development of acute chest syndrome in sickle cell disease.

Lewing K, Britton K, Debaun M, Woods G.

J Pediatr Hematol Oncol. 2011 May;33(4):255-60.

PMID: 21464764 [PubMed - in process]

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Safety of short-term valacyclovir as an anti-sickling agent in sickle-cell anemia.

Ender KL, DeBellis RH, Erlanger BF, Billote GB, Brittenham GM.

Pediatr Blood Cancer. 2011 May;56(5):843-5. doi: 10.1002/pbc.22809. Epub 2011 Jan 13.

PMID: 21370420 [PubMed - in process]

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The impact of a multidisciplinary pain management model on sickle cell disease pain hospitalizations.

Brandow AM, Weisman SJ, Panepinto JA.

Pediatr Blood Cancer. 2011 May;56(5):789-93. doi: 10.1002/pbc.22874. Epub 2010 Dec 15.

PMID: 21370412 [PubMed - in process]

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Neurocognitive deficits in children with sickle cell disease: a comprehensive profile.

Hijmans CT, Fijnvandraat K, Grootenhuis MA, van Geloven N, Heijboer H, Peters M, Oosterlaan J.

Pediatr Blood Cancer. 2011 May;56(5):783-8. doi: 10.1002/pbc.22879. Epub 2010 Dec 15.

PMID: 21370411 [PubMed - in process]

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Effect of transfusion therapy on transcranial Doppler ultrasonography velocities in children with sickle cell disease.

Kwiatkowski JL, Yim E, Miller S, Adams RJ; STOP 2 Study Investigators.

Pediatr Blood Cancer. 2011 May;56(5):777-82. doi: 10.1002/pbc.22951. Epub 2010 Dec 23.

PMID: 21370410 [PubMed - in process]

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Leukocytosis is a risk factor for lung function deterioration in children with sickle cell disease.

Tassel C, Arnaud C, Kulpa M, Fleurence E, Kandem A, Madhi F, Bernaudin F, Delacourt C.

Respir Med. 2011 May;105(5):788-95. Epub 2011 Feb 5.

PMID: 21295957 [PubMed - in process]

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Genetic predictors for stroke in children with sickle cell anemia.

Flanagan JM, Frohlich DM, Howard TA, Schultz WH, Driscoll C, Nagasubramanian R, Mortier NA, Kimble AC, Aygun B, Adams RJ, Helms RW, Ware RE.

Blood. 2011 Apr 22. [Epub ahead of print]

PMID: 21515823 [PubMed - as supplied by publisher]

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Allogeneic cellular gene therapy in hemoglobinopathies-evaluation of hematopoietic SCT in sickle cell anemia.

Lucarelli G, Gaziev J, Isgrò A, Sodani P, Paciaroni K, Alfieri C, De Angelis G, Marziali M, Simone MD, Gallucci C, Roveda A, Saltarelli F, Torelli F, Andreani M.

Bone Marrow Transplant. 2011 Apr 18. [Epub ahead of print]

PMID: 21499319 [PubMed - as supplied by publisher]

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Outpatient follow-up and rehospitalizations for sickle cell disease patients.

Leschke J, Panepinto JA, Nimmer M, Hoffmann RG, Yan K, Brousseau DC.

Pediatr Blood Cancer. 2011 Apr 14. doi: 10.1002/pbc.23140. [Epub ahead of print]

PMID: 21495162 [PubMed - as supplied by publisher]

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Fetal hemoglobin in sickle cell anemia.

Akinsheye I, Alsultan A, Solovieff N, Ngo D, Baldwin CT, Sebastiani P, Chui DH, Steinberg MH.

Blood. 2011 Apr 13. [Epub ahead of print]

PMID: 21490337 [PubMed - as supplied by publisher]

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The Association Between Hydroxyurea Treatment and Pain Intensity, Analgesic Use, and Utilization in Ambulatory Sickle Cell Anemia Patients.

Smith WR, Ballas SK, McCarthy WF, Bauserman RL, Swerdlow PS, Steinberg MH, Waclawiw MA; the Investigators of the Multicenter Study of Hydroxyurea in Sickle Cell Anemia.

Pain Med. 2011 Apr 11. doi: 10.1111/j.1526-4637.2011.01096.x. [Epub ahead of print]

PMID: 21481164 [PubMed - as supplied by publisher]

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A pilot study of the short-term use of simvastatin in sickle cell disease: effects on markers of vascular dysfunction.

Hoppe C, Kuypers F, Larkin S, Hagar W, Vichinsky E, Styles L.

Br J Haematol. 2011 Apr 8. doi: 10.1111/j.1365-2141.2010.08480.x. [Epub ahead of print]

PMID: 21477202 [PubMed - as supplied by publisher]

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Hospital volume, hospital teaching status, patient socioeconomic status, and outcomes in patients hospitalized with sickle cell disease.

McCavit TL, Lin H, Zhang S, Ahn C, Quinn CT, Flores G.

Am J Hematol. 2011 Apr;86(4):377-80. doi: 10.1002/ajh.21977. No abstract available.

PMID: 21442644 [PubMed - in process]

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Sickle Cell Events

May 1, 2011 Ontario, Canada - You are invited to join us on Sunday, May 1st for our ‘Walk Good’ Walk-a-Thon with the Jamaican Canadian Centre.
What a great way to participate in your community by exercising and raising money for Sickle Cell Anemia. Please encourage your family, friends, schools, coworkers and church members to come out and support The Sickle Cell Association of Ontario.
Please click for more information.

May 7, 2011 Washington DC - SCANCA Workshop & Membership Meeting
The Effects of Sickle Cell Disease on Family Dynamics
Date: Saturday, May 7
Time: 9:00 AM
Place: Plymouth Congregational Church
5301 North Capitol Street, NE
Washington, D.C. 20011


May 10, 2011 Washington DC - Roland B. Scott Memorial Symposium on May 10, 2011 from 2 to 6 pm at Howard University Hospital. Drs Wally Smith, Samir Ballas and Crystal Patil will lead the discussion on the subject of pain in sickle cell disease---battling stigma and gaps in knowledge. There will be a panel discussion with representatives from the community, providers and specialists. Registration is free.

Please also join us as we celebrate 40 years of outstanding research and service by the Howard University Center for Sickle Cell Disease with Exhibits, Blood Drive, Free Screening and Workshop on Transition to Adult Life. These events will be held between 8 am to 2 pm at Howard University Hospital (call 2028657262 or for more info). Refreshments will be served and there will be live entertainment.

Roland B. Scott Symposium will be webcast live and can be viewed at and and later as a video on these sites.

June 3-4, 2011 The 3rd Symposium on Cardiopulmonary Complications of Sickle Cell Disease, at Cincinnati Children’s Hospital Medical Center –.

We are pleased to host the Third Symposium on “Cardiopulmonary Complications of Sickle Cell Disease” to be held on Friday, June 3 – Saturday, June 4, 2011 at Cincinnati Children’s Hospital Medical Center, Cincinnati, OH from 8:00 am Friday to 1:00 pm on Saturday.

We have invited 20 outstanding speakers from outside institutions and distinguished physicians and scientists from the Ohio Sickle Cell Alliance for Research (OSCAR) working on cardiac and/or pulmonary dysfunction in sickle cell disease. We hope to have a wide range of presentations spanning basic science investigations and clinical research. The goal is to share your data and perspectives on these issues, have a thoughtful discussion and consensus of where the field stands, and find common ground on which to build clinical and basic research to move the field forward.

Format of the Symposium: the sessions will be informal where speakers present their latest work and not focus on lengthy talks, so that there enough time for discussion. Presentations will be 15 minutes with 10 minutes reserved for questions or discussion.

We postdoctoral fellows and graduate students to register, send in their abstracts for poster presentations and attend the symposium. We will provide meals to all trainees during the symposium, as part of registration, and have highly subsidized the registration fee to a minimum ($100) to encourage trainees to attend.

Lodging will also be available at highly subsidized rates within two blocks of Cincinnati Children’s Hospital.

Submit Abstract by: April 1, 2011 Registration* by: May 1, 2011
Register and Submit Abstracts at Website:
Contact: Maggie Legg,, 513-636-1333

Sickle Cell in Focus 2011 16-17 June, London* Hosted by Swee Lay Thein,
Professor of Molecular Haematology King's College London and Consultant
Haematologist King's College Hospital
Our increasingly popular annual two-day conference, Sickle Cell in
Focus, takes place on 16 and 17 June 2011, London. It aims to highlight
and discuss emerging clinical complications and management of sickle
cell disease. The clinical and scientific research lectures attracts and
national and international audience of consultants, trainee doctors,
academics and healthcare professionals involved in the care of patients
with the disease. For more information please contact Annabelle Kelly: SCiF 2011:weblink

June 19, 2011 World Sickle Cell Day –
Ontario Canada

June 25, 2011 -The 15th Annual Sickle Cell Walk/Run is on June 25th. The registration starts at 7am and the race starts at 8am at Riverside Park/Family Center here in Indianapolis, IN. Martin Center, INC. 3545 N. College Ave.Indianapolis, IN 46205 317-927-5158 phone


JULY 31-AUG 5 Sickle Cell Camp in Georgia

Who: Children and teens ages 6-17 who are living with sickle cell disease.

What: A camp specifically designed for children living with sickle cell dis-ease.

Where: A NEW location this year at Camp Twin Lakes, Will-A-Way in Winder, GA.

Why: Camp New Hope’s mission is to provide an enriching experience that fosters independence, self-esteem, and friendship.

Cost: Georgia Residents

$40-$60 *depending upon number of chil-dren from same household


(Subsidized by Sickle Cell Foundation of Georgia and Camp Twin Lakes)

FYI– Cabins are air-conditioned and handicapped-accessible. Campers have 24/7 access to medical staff.

Apply online:

First International Sickle Cell Conference August 1 – 6,2011 in Bamenda, Cameroon

Theme: hope for wholeness - a new name and voice to sickle cell Fr John Kolkman Foundation in collaboration with various partners is organizing an international conference on sickle cell that will focus on the early detection, proper management and treatment of sickle cell, support services and increased awareness. The conference, a life-changing event, will among other things provide a unique opportunity for knowledge transfer and exchange, open a new arena for research, provide a forum for developing a road map to address sickle cell in Cameroon. Expected outcomes include an enhanced awareness and education of the community on the prevention and management of the disease.

The Catholic University of Cameroon, CATUC, Bamenda is hosting the conference, under the auspices of the North West Regional Delegate of Health, Dr Ndiforchu Afanwi Victor.

Conference Objectives
Build and strengthen the participant's knowledge base on sickle cell disease/trait
Meet and converse with persons suffering from and affected by sickle cell disease/trait
Discuss sickle cell complications, current and future management regimen
Inaugurate the Fr John Kolkman comprehensive sickle cell center
Who Should Attend?
Nurses, health care professionals and providers, pharmacists, educators
Social welfare workers, persons and families affected, policy makers, researchers
Civil and traditional leaders, health care chaplains
Conference Format and Expectations
Discussion forums, presentations, story telling, workshops
Tour of selected local Palaces, Museums, Parks and landscapes
Entertainment: traditional dances and local artist
Assorted dishes form regional cuisines
Recognition and Decorations of participants by traditional dignitaries
Key Deadlines
16 April: Abstract submission
30 April: Notification of abstract acceptance
May 30: Early bird registration ($50.00 fee) begins/Accommodation bookings
June 30: Accommodation bookings closed
Atlanta, GA - Saturday September 17, 2011 Sickle Cell Education Day save the date

Sickle Cell Disease Association of America annual convention:
SCDAA 39th Annual Convention September 27, 2011 - October 1, 2011 Registration begins March 15, 2011 Memphis, TN 

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