Uganda: Kabaka Injects Shs494m to End Sickle Cell Disease
[Monitor] The Kabaka of Buganda Ronald Muwenda Mutebi II has injected shs494m in Sickle cell prevention and treatment campaign. (Source: AllAfrica News: Health and Medicine)
Source: AllAfrica News: Health and Medicine - May 16, 2019 Category: African Health Source Type: news

Routine sickle cell disease screening among migrants may help save lives
(American Society of Hematology) Hematologists are zeroing in on the escalating humanitarian crisis in southern Europe by assessing the burden of blood disorders among refugees and identifying strategies to facilitate more timely identification and treatment of refugees with sickle cell disease (SCD). A study from an Italian research team published today in Blood suggests SCD is common among refugees and screening efforts should be increased. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - May 9, 2019 Category: International Medicine & Public Health Source Type: news

The FDA Encourages New Treatments for Sickle Cell Disease
The U.S. Food and Drug Administration is collaborating with patients, academics, and the pharmaceutical industry to encourage the development of new treatments for sickle cell disease (SCD). (Source: FDA Consumer Health Information Updates)
Source: FDA Consumer Health Information Updates - May 3, 2019 Category: Consumer Health News Authors: FDA Source Type: news

Here Are The 2019 Finalists For The NBA Community Assist Award
One of the finalists is the Memphis Grizzlies'Mike Conley, who just announced a half-a-million dollar donation to combating sickle cell disease. (Source: Forbes.com Healthcare News)
Source: Forbes.com Healthcare News - April 30, 2019 Category: Pharmaceuticals Authors: Bruce Y. Lee, Contributor Source Type: news

EU Panel Recommends Hydroxycarbamide for Sickle Cell Disease EU Panel Recommends Hydroxycarbamide for Sickle Cell Disease
An EMA committee recommended marketing authorization for hydroxycarbamide for the prevention of vaso-occlusive complications of sickle cell disease in patients older than 2 years.International Approvals (Source: Medscape Hematology-Oncology Headlines)
Source: Medscape Hematology-Oncology Headlines - April 27, 2019 Category: Cancer & Oncology Tags: Hematology-Oncology News Alert Source Type: news

First U.S. Patients Treated With CRISPR As Human Gene-Editing Trials Get Underway
This could be a crucial year for the powerful gene-editing technique CRISPR as researchers start testing it in patients to treat diseases such as cancer, blindness and sickle cell disease.(Image credit: Molekuul/Getty Images/Science Photo Library) (Source: NPR Health and Science)
Source: NPR Health and Science - April 16, 2019 Category: Consumer Health News Authors: Rob Stein Source Type: news

Game-changing advancements in sickle cell disease care
The last few decades have brought drastic improvement to sickle cell disease patients ’ quality of life, and Atrium Health has been an innovator in this field. Read more about Atrium Health's sickle cell program and download the eBook. Atrium Health, one of the nation's leading and most innovative healthcare organizations care throughout the Southeast region, works to enhance the overall health and well-being of its communities through high-quality patient care, education and research programs,… (Source: bizjournals.com Health Care:Physician Practices headlines)
Source: bizjournals.com Health Care:Physician Practices headlines - April 15, 2019 Category: American Health Source Type: news

CDC Clarifies Guideline on Opioid Prescribing for Chronic Pain
Clarification pertains to opioid prescribing for cancer patients, cancer survivors, sickle cell disease (Source: The Doctors Lounge - Oncology)
Source: The Doctors Lounge - Oncology - April 12, 2019 Category: Cancer & Oncology Tags: Oncology, Pharmacy, Anesthesiology & amp; Pain, Institutional, Source Type: news

Cochrane's 30 under 30: Ndi Euphrasia Ebai-Atuh
Cochrane is made up of  13,000 members and over 50,000 supporters come from more than 130 countries, worldwide. Our volunteers and contributors are researchers, health professionals, patients, carers, people passionate about improving health outcomes for everyone, everywhere.Cochrane is an incredible community of people who all play their part in improving health and healthcare globally. We believe that by putting trusted evidence at the heart of health decisions we can achieve a world of improved health for all.  Many  of our contributors are young people working with Cochrane ...
Source: Cochrane News and Events - April 12, 2019 Category: Information Technology Authors: Lydia Parsonson Source Type: news

Grizzlies' Mike Conley donates $1M to Methodist's sickle cell center
Memphis Grizzlies point guard Mike Conley has been an advocate and supporter of sickle cell awareness and treatment since 2010. That year Conley was on the fundraising committee to raise money for the Comprehensive Sickle Cell Center at Methodist University Hospital. Today, he made a $500,000 donation of his own to the cause. Conley’s latest donation to the center brings the total that he’s helped raise to more than $1 million. The center’s clinic will be named The Mike and Mary Conley… (Source: bizjournals.com Health Care:Physician Practices headlines)
Source: bizjournals.com Health Care:Physician Practices headlines - April 11, 2019 Category: American Health Authors: Jason Bolton Source Type: news

A New Jersey High School Principal Died After Donating Bone Marrow to a Young Boy in France
A popular New Jersey high school principal died Sunday after donating bone marrow to a young boy in France, his family confirmed to news outlets. Derrick Nelson, who was the principal at New Jersey’s Westfield High School, never recovered after falling into a monthlong coma following a bone marrow donation procedure at a Bergen County hospital, his father told NJ.com. Nelson died Sunday at age 44, though the exact cause of his death was unclear, his father said; he told ABC News that his son may have had a heart attack. Nelson was donating bone marrow to supply stem cells to a 14-year-old boy in France with an undisc...
Source: TIME: Health - April 11, 2019 Category: Consumer Health News Authors: Jamie Ducharme Tags: Uncategorized Education New Jersey onetime Source Type: news

CDC Clarifies Opioid Guidelines for Severe Pain
Some insurers had cited the CDC’s previous opioid guidelines and refused to pay for prescriptions for patients with cancer or sickle cell anemia, or other chronic pain conditions. (Source: WebMD Health)
Source: WebMD Health - April 10, 2019 Category: Consumer Health News Source Type: news

Insurers' Denials of Opioid Coverage Spurs CDC to Clarify Guidelines
TUESDAY, April 9, 2019 -- People with severe pain from cancer or sickle cell anemia should not be denied coverage for opioid painkillers, a new clarification on federal guidelines states. In the wake of the national opioid epidemic, various medical... (Source: Drugs.com - Daily MedNews)
Source: Drugs.com - Daily MedNews - April 9, 2019 Category: General Medicine Source Type: news

Menstruation and QoL in Women With Sickle Cell Disease Menstruation and QoL in Women With Sickle Cell Disease
This study aimed to elucidate the clinical features of menstruation in young women with sickle cell disease, and their impact on quality of life.Southern Medical Journal (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - April 3, 2019 Category: Consumer Health News Tags: Family Medicine/Primary Care Journal Article Source Type: news

New report shows nearly 20 innovative medicines in development for sickle cell disease
Sickle cell disease (SCD) is the most common inherited blood disorder in the United States, afflicting nearly 100,000 Americans. Patients with SCD have sickle-shaped red blood cells, which have trouble moving through the blood vessels and thus cause blockages or slow blood flow and oxygen to parts of the body. SCD is life-threatening, due to potential complications from blocked blood vessels, which can include stroke, difficulty breathing, pulmonary hypertension and other organ damage. (Source: The Catalyst)
Source: The Catalyst - April 2, 2019 Category: Pharmaceuticals Tags: Medicines in Development Research and Development Rare Diseases New Era of Medicine Source Type: news

Big Jump in Success for Sickle Cell Transplants
(MedPage Today) -- Small increase in radiation, big boost to engraftment of haploidentical marrow (Source: MedPage Today Primary Care)
Source: MedPage Today Primary Care - March 15, 2019 Category: Primary Care Source Type: news

Experts Are Calling for a Ban on Gene Editing of Human Embryos. Here ’s Why They’re Worried
In November 2018, Chinese biophysicist Jiankui He stunned the world when he announced that he had used a controversial gene-editing technology, called CRISPR, to genetically alter the genes in embryos and give them immunity to HIV. The embryos were transferred to the woman who provided the eggs to create them, and twin girls were born. The move, considered highly experimental and unethical by most scientists around the world, prompted intense debate in the scientific community about not just the implications for the twins, but for society as well. When applied to human eggs, sperm and embryos, gene-editing technologies, of...
Source: TIME: Health - March 13, 2019 Category: Consumer Health News Authors: Alice Park Tags: Uncategorized Genetics Source Type: news

First sickle cell patient to get gene therapy is symptom-free after 9 months
Manny Johnson, 21, was treated for sickle cell disease with an experimental gene therapy to stop his body from making faulty blood cells. Nine months later, he is symptom free. (Source: the Mail online | Health)
Source: the Mail online | Health - March 11, 2019 Category: Consumer Health News Source Type: news

Sickle cell anemia patients react to breakthrough treatment
A cutting-edge clinical trial made a breakthrough in its effort to cure sickle cell anemia. The painful genetic disease affects about 100,000 Americans every year, mostly African Americans. On "60 Minutes," Dr. Jon LaPook followed Jenelle Stephenson for more than a year as she underwent an innovative kind of gene therapy at the National Institutes of Health. The therapy uses HIV to treat patients, but the virus is weakened, so it cannot cause AIDS. LaPook, who watched his report Sunday night with four sickle cell anemia patients, and Stephenson join "CBS This Morning" to discuss the remarkable trial res...
Source: Health News: CBSNews.com - March 11, 2019 Category: Consumer Health News Source Type: news

When Your Child Gets Diagnosed With Sickle Cell Disease
Fear, anxiety, exasperation… this is what ran through my mind when I heard the words, “Your daughter has sickle cell disease.” Being told that your child has a chronic illness ... The post When Your... {This is a content summary only. Click the blog post title to continue reading this post, share your comments, browse the blog and more!} (Source: Red Cross Chat)
Source: Red Cross Chat - February 27, 2019 Category: International Medicine & Public Health Authors: American Red Cross Tags: Blood blood donations blood donor blood donor app blood transfusion game of thrones HBO sickle cell disease Source Type: news

Six-year-old boy who's suffered stroke desperately searches for bone marrow donor 
Ayden Palmer, six, from Prosper, Texas, is battling sickle cell disease, an inherited disorder that causes red blood cells to have a crescent shape, which blocks proper blood flow in vessels. (Source: the Mail online | Health)
Source: the Mail online | Health - February 12, 2019 Category: Consumer Health News Source Type: news

Sickle Cell Pioneer Dr Doris Wethers Dead at 91 Sickle Cell Pioneer Dr Doris Wethers Dead at 91
Along with her research in sickle cell anemia, Wethers was also a trailblazer for African American women in the medical community.Medscape Medical News (Source: Medscape Medical News Headlines)
Source: Medscape Medical News Headlines - February 12, 2019 Category: Consumer Health News Tags: Pediatrics News Source Type: news

Six-year-old boy who's suffered stroke and brain cancer desperately searches for bone marrow donor  
Ayden Palmer, six, from Prosper, Texas, is battling sickle cell disease, an inherited disorder that causes red blood cells to have a crescent shape, which blocks proper blood flow in vessels. (Source: the Mail online | Health)
Source: the Mail online | Health - February 11, 2019 Category: Consumer Health News Source Type: news

Six-year-old boy who's suffered stroke and brain cancer desperately searches for bone marrow donor 
Ayden Palmer, six, from Prosper, Texas, is battling sickle cell disease, an inherited disorder that causes red blood cells to have a crescent shape, which blocks proper blood flow in vessels. (Source: the Mail online | Health)
Source: the Mail online | Health - February 11, 2019 Category: Consumer Health News Source Type: news

Dr. Doris Wethers, 91, on Front Lines Against Sickle Cell, Dies
Breaking racial barriers in New York ’ s medical world, she earned renown for research and advocacy that led to mandatory testing for sickle cell anemia. (Source: NYT Health)
Source: NYT Health - February 7, 2019 Category: Consumer Health News Authors: SAM ROBERTS Tags: Blacks Deaths (Obituaries) Sickle Cell Anemia Yale School of Medicine St Luke's-Roosevelt Hospital Center Francis-McBarnette, Yvette Fay (1926-2016) Wethers, Dr. Doris Source Type: news

The silence of sickle cell disease
(Children's Hospital Los Angeles) Silent strokes are a common symptom of sickle cell disease, though they can be debilitating. John Wood, MD, PhD, of Children's Hospital Los Angeles recently showed that silent strokes may be caused by decreased oxygen delivery to a part of the brain called the white matter. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - February 6, 2019 Category: International Medicine & Public Health Source Type: news

Uganda: Film Production Company Embarks On Fight Against Sickle Cell Disease
[Monitor] Worldwide, the burden of Sickle Cell disease has not been amply addressed. Uganda has the 5th highest burden, a situation aggravated by limited and inaccessible formal social support structures to aid patients and families to cope better with the psychosocial burden of sickle cell. (Source: AllAfrica News: Health and Medicine)
Source: AllAfrica News: Health and Medicine - February 4, 2019 Category: African Health Source Type: news

Gene Therapy Shows Promise Against Sickle Cell
Despite promising results, it's unclear if the effects of treatment will last and it's likely to be at least three years before a genetic therapy for sickle cell disease is approved. (Source: WebMD Health)
Source: WebMD Health - January 28, 2019 Category: Consumer Health News Source Type: news

Ghana: Govt Partners Novartis to Accelerate Sickle Cell Treatment
[Ghanaian Times] The government has signed a Memorandum of Understanding with global medicines company, Novartis to create a new public-private partnership designed to improve the diagnoses and accelerate treatment for people with sickle cell disease (SCD). (Source: AllAfrica News: Health and Medicine)
Source: AllAfrica News: Health and Medicine - January 28, 2019 Category: African Health Source Type: news

Gene Therapy Shows Promise Against Sickle Cell Disease
Title: Gene Therapy Shows Promise Against Sickle Cell DiseaseCategory: Health NewsCreated: 1/28/2019 12:00:00 AMLast Editorial Review: 1/28/2019 12:00:00 AM (Source: MedicineNet Chronic Pain General)
Source: MedicineNet Chronic Pain General - January 28, 2019 Category: Anesthesiology Source Type: news

These Patients Had Sickle-Cell Disease. Experimental Therapies Might Have Cured Them.
Success against sickle-cell would be “ the first genetic cure of a common genetic disease ” and could free tens of thousands of Americans from agonizing pain. (Source: NYT Health)
Source: NYT Health - January 27, 2019 Category: Consumer Health News Authors: GINA KOLATA Tags: Genetics and Heredity Hemoglobin Crispr (DNA) Blood Pain Sickle Cell Anemia National Institutes of Health Harvard University bluebird bio Inc. Africa Source Type: news

These Patients Had Sickle-Cell Disease. Experimental Therapies May Have Cured Them.
Success against sickle-cell would mark “ the first genetic cure of a common genetic disease ” and could free tens of thousands of Americans from agonizing pain. (Source: NYT Health)
Source: NYT Health - January 27, 2019 Category: Consumer Health News Authors: GINA KOLATA Tags: Genetics and Heredity Hemoglobin Crispr (DNA) Blood Pain Sickle Cell Anemia National Institutes of Health Harvard University bluebird bio Inc. Africa Source Type: news

Ghana: Government of Ghana Partners Novartis to Improve Diagnosis, Treatment of Sickle Cell Disease
[Ghana Presidency] The Government of Ghana, through the Ministry of Health, Ghana Health Service and other allied agencies, has signed a Memorandum of Understanding with global medicines company Novartis to create a new public-private partnership designed to improve the diagnoses and accelerate treatment for people with Sickle Cell Disease (SCD). (Source: AllAfrica News: Health and Medicine)
Source: AllAfrica News: Health and Medicine - January 25, 2019 Category: African Health Source Type: news

Stem Cell Transplant a Promising Option in Sickle Cell Anemia Stem Cell Transplant a Promising Option in Sickle Cell Anemia
Matched sibling donor hematopoietic stem cell transplantation (MSD-HSCT) is a promising option for children with sickle cell anemia (SCA) requiring chronic transfusion due to elevated transcranial Doppler velocity (TCD), a study from France suggests.Reuters Health Information (Source: Medscape Medical News Headlines)
Source: Medscape Medical News Headlines - January 24, 2019 Category: Consumer Health News Tags: Hematology-Oncology News Source Type: news

Sickle cell: Call The Midwife shines spotlight on disease
Sickle cell carriers took to social media to praise the show's portrayal of the genetic disease. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - January 21, 2019 Category: Consumer Health News Source Type: news

Hopkins Nursing—No. 1 for Online Education
Hopkins Nursing—No. 1 for Online Education body,#bodyTable,#bodyCell{ height:100% !important; margin:0; padding:0; width:100% !important; } table{ border-collapse:collapse; } img,a img{ border:0; outline:none; text-decoration:none; } h1,h2,h3,h4,h5,h6{ margin:0; padding:0; } p{ margin:1em 0; padding:0; } a{ word-wrap:break-word; } .mcnPreviewText{ display:none !important; } .ReadMsgBody{ width:100%; } .ExternalClass{ width:100%; } .ExternalClass,.ExternalClass p,.ExternalClass span,.ExternalClass font,.ExternalClass td,.Externa...
Source: Johns Hopkins University and Health Systems Archive - January 15, 2019 Category: Nursing Source Type: news

UCLA researchers correct genetic mutation that causes IPEX, a life-threatening autoimmune syndrome
UCLA researchers led by Dr. Donald Kohn have created a method for modifying blood stem cells to reverse the genetic mutation that causes a life-threatening autoimmune syndrome called IPEX. The gene therapy, which was tested in mice, is similar to the technique Kohn has used to cure patients with another immune disease, severe combined immune deficiency, or SCID, also known as bubble baby disease.The workis described in a study published in the journal Cell Stem Cell.IPEX is caused by a mutation that prevents a gene called FoxP3 from making a protein needed for blood stem cells to produce immune cells called regulatory T ce...
Source: UCLA Newsroom: Health Sciences - January 10, 2019 Category: Universities & Medical Training Source Type: news

Sickle cell disease community is hopeful that genome editing will rechart course of the disease
In the first study of its kind, NHGRI researchers explored patients', parents' and physicians' perspectives on the use of CRISPR-Cas9 gene-editing to reverse sickle cell disease. Study participants expressed overall optimism about participating in human genome editing clinical trials, but were concerned about treatment risks and transparency of the research enterprise, according to the findings published December 24 inGenetics in Medicine. (Source: NHGRI Homepage Highlights)
Source: NHGRI Homepage Highlights - January 3, 2019 Category: Genetics & Stem Cells Source Type: news

New Law Boosts Fight Against Sickle Cell Disease
WEDNESDAY, Dec. 19, 2018 -- A sickle cell disease prevention and treatment program in the United States has been reauthorized to receive nearly $5 million each year over the next five years. The measure was included in a bipartisan bill that aims to... (Source: Drugs.com - Pharma News)
Source: Drugs.com - Pharma News - December 19, 2018 Category: Pharmaceuticals Source Type: news

New Law Boosts Fight Against Sickle Cell Disease
Title: New Law Boosts Fight Against Sickle Cell DiseaseCategory: Health NewsCreated: 12/18/2018 12:00:00 AMLast Editorial Review: 12/19/2018 12:00:00 AM (Source: MedicineNet Chronic Pain General)
Source: MedicineNet Chronic Pain General - December 19, 2018 Category: Anesthesiology Source Type: news

Gates Foundation gives $1.5M to Children's for sickle cell research
The Bill& Melinda Gates Foundation has donated $1.5 million to Boston Children ’s Hospital to develop a gene therapy for sickle cell disease, with the goal of making the drug technology more widely available in regions of the world with high rates of the condition. Gene therapy holds promise to treat the more than 275,000 infants who are born annually with sickle cell disea se. But such drugs are complicated — and costly — to produce. Blood stem cells are removed from the body, treated with… (Source: bizjournals.com Health Care:Pharmaceuticals headlines)
Source: bizjournals.com Health Care:Pharmaceuticals headlines - December 19, 2018 Category: Pharmaceuticals Authors: Jessica Bartlett Source Type: news

Gates Foundation gives $1.5M to Children's for sickle cell research
The Bill& Melinda Gates Foundation has donated $1.5 million to Boston Children ’s Hospital to develop a gene therapy for sickle cell disease, with the goal of making the drug technology more widely available in regions of the world with high rates of the condition. Gene therapy holds promise to treat the more than 275,000 infants who are born annually with sickle cell disea se. But such drugs are complicated — and costly — to produce. Blood stem cells are removed from the body, treated with… (Source: bizjournals.com Health Care:Biotechnology headlines)
Source: bizjournals.com Health Care:Biotechnology headlines - December 19, 2018 Category: Biotechnology Authors: Jessica Bartlett Source Type: news

Weekly Postings
See something of interest? Please share our postings with colleagues in your institutions! Spotlight Blast off! The National Network of Libraries of Medicine is getting into Summer Reading! A Universe of Stories is coming to public libraries this summer in celebration of the 50th anniversary of the first moon landing. Explore DNA and family history, make stardust, discover astronaut food, and more with our science programs for kids, teens, and adults. Check out the NNLM Summer Reading Manual for program guides created in partnership with the Collaborative Summer Library Program. National Safe Toys and Giving Month: Decembe...
Source: NN/LM Middle Atlantic Region Blog - December 14, 2018 Category: Databases & Libraries Authors: Hannah Sinemus Tags: Weekly Postings Source Type: news

Africa: In Africa, Sickle Cell Patients Endure Pain, Discrimination
[VOA] Africans who have the blood disorder sickle cell anemia met this week in the northern Cameroon town of Garoua to step up an awareness campaign. (Source: AllAfrica News: Health and Medicine)
Source: AllAfrica News: Health and Medicine - December 13, 2018 Category: African Health Source Type: news

New Sickle Cell Test Can Transform Screening New Sickle Cell Test Can Transform Screening
The HemoTypeSC test, which is cheap, highly accurate, and easy to use in settings with few resource, can change the dynamics of sickle cell disease screening.Medscape Medical News (Source: Medscape Medical News Headlines)
Source: Medscape Medical News Headlines - December 10, 2018 Category: Consumer Health News Tags: Hematology-Oncology News Source Type: news

Measles Vaccination; Sickle Cell and Hydroxyurea: It's PodMed Double T! (with audio)
(MedPage Today) -- This week's topics also include U.S. mortality data and the acute flaccid myelitis situation (Source: MedPage Today Pediatrics)
Source: MedPage Today Pediatrics - December 8, 2018 Category: Pediatrics Source Type: news

Gene Therapy for Sickle Cell Takes Another Step Forward
Title: Gene Therapy for Sickle Cell Takes Another Step ForwardCategory: Health NewsCreated: 12/4/2018 12:00:00 AMLast Editorial Review: 12/5/2018 12:00:00 AM (Source: MedicineNet Chronic Pain General)
Source: MedicineNet Chronic Pain General - December 5, 2018 Category: Anesthesiology Source Type: news

Sickle Cell Gene Therapy Makes Another Advance
The therapy targets the genetic flaw that causes sickle cell. In a small group of patients, researchers said the therapy appears safe and effective enough to keep moving forward into larger trials. (Source: WebMD Health)
Source: WebMD Health - December 4, 2018 Category: Consumer Health News Source Type: news

Gene therapy treatment reverses sickle cell anemia, early trial results show
A new gene therapy for sickle cell anemia has shown promise in early clinical trials after reversing the condition's symptoms in two adults, researchers report. (Source: Health News - UPI.com)
Source: Health News - UPI.com - December 4, 2018 Category: Consumer Health News Source Type: news

$2 Test Could Transform Sickle Cell Dx in Africa
(MedPage Today) -- May have applications in high-income countries as well (Source: MedPage Today Public Health)
Source: MedPage Today Public Health - December 4, 2018 Category: American Health Source Type: news