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Sickle Cell News January 2021

By norah.elmagraby On January 28, 2021 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ MARAC Advisory Statement: COVID-19 Vaccines December 14, 2020 — News is evolving rapidly about COVID-19 and COVID-19 vaccines.Early results from the COVID-19 vaccine trials are very promising, although the true benefits and risks will not be known until a larger number of people receive the vaccine. The Centers [...]

Sickle Cell News for December 2020

By norah.elmagraby On December 3, 2020 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ Help Spread the Word about Blood Donations as U.S. Blood Supply Declines The blood supply in the United States is critically low and the majority of the country’s blood centers are reporting significant declines in their blood collections. As the nation confronts new surges of COVID-19 cases, [...]

Sickle Cell News for November 2020

By norah.elmagraby On November 2, 2020 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ SCDC UpdateOctober 22, 2020 New Community Resources Released on Gene Therapy for SCD Make sure to check out the recently released resources for the community on gene therapy for sickle cell disease (SCD), including a short video and infographic. The resources were jointly developed by the American [...]

Sickle Cell News for October 2020

By norah.elmagraby On October 12, 2020 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ Spread the Word About the Sickle Cell Disease ChallengeDo you know college or graduate students who would like to help reduce stigma and improve understanding of sickle cell disease? Encourage them to join the NHLBI’s new Challenge to improve sickle cell disease awareness. The NHLBI will award [...]

Sickle Cell News for September 2020

By norah.elmagraby On September 1, 2020 · Add Comment · In Newsletter

Sickle Cell News for September 2020– To join or leave the listserv visit https://scinfo.org/newsletter/ September is Sickle Cell Month The Howard University’s1867 Health Innovations Project and Center for Sickle Cell Disease have entered into a new partnership with the U.S. Department of Health and Human Services (HHS) aimed at finding ways to use technology and [...]

Sickle Cell News for August 2020

By shari.ann.wejsa@emory.edu On August 13, 2020 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ Could gene therapy cure sickle cell anemia? An NIH clinical trial is ushering in a genetic revolution as an innovative type of gene therapy is used to attempt to cure sickle cell anemia. Dr. Jon LaPook reports. 60 Minutes Report and video https://www.cbsnews.com/news/could-gene-therapy-cure-sickle-cell-anemia-60-minutes-2020-07-26/ Effect of Inhaled Cannabis [...]

Sickle Cell News for July 2020

By shari.ann.wejsa@emory.edu On July 3, 2020 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ A Year In, 1st Patient To Get Gene Editing For Sickle Cell Disease Is ThrivingSince receiving a landmark treatment with the gene-editing tool CRISPR, a sickle cell patient has the strength to care for herself and her children — while navigating the pandemic.Read in NPR: https://apple.news/A732Gi2ZuTiabNX7QKC22EA New [...]

Sickle Cell News for June 2020

By shari.ann.wejsa@emory.edu On June 5, 2020 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ World Sickle Cell Day- June 19th The Global Alliance of Sickle Cell Disease Organizations (GASCDO) wishes to share with you its two activities planned for World Sickle Cell Day- June 19th 2020. As member of the global sickle cell community, we encourage you and your organization to [...]

Sickle Cell News for May 2020

By shari.ann.wejsa@emory.edu On May 4, 2020 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ Coping With Sickle Cell Disease During The COVID-19 Pandemic https://www.wabe.org/sickle-cell-disease-and-covid-19/ The coronavirus pandemic is difficult in a number of ways, but it’s especially hard for those who live with sickle cell disease. The inherited red blood cell disorder happens when there aren’t enough healthy red blood cells [...]

Sickle Cell News for April 2020

By shari.ann.wejsa@emory.edu On April 7, 2020 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ What You Need to Know About the Coronavirus (COVID-19) With COVID-19 on the forefront of nearly everyone’s minds, SCDAA wants to provide information from the Centers for Disease Control (CDC) to our sickle cell community. Educating yourself about the coronavirus reduces anxiety and empowers you to prevent and [...]

Sickle Cell News for March 2020

By shari.ann.wejsa@emory.edu On March 17, 2020 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ NIH announces $1 million prize competition to target global disease diagnostics Bill & Melinda Gates Foundation to offer supplementary support for designs that can be developed into products on a rapid timeframe. https://www.nih.gov/news-events/news-releases/nih-announces-1-million-prize-competition-target-global-disease-diagnosticsThe National Institutes of Health has launched a $1 million Technology Accelerator Challenge to spur the design [...]

Sickle Cell News for February 2020

By shari.ann.wejsa@emory.edu On February 5, 2020 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ At 16, She’s a Pioneer in the Fight to Cure Sickle Cell DiseaseHelen Obando is the youngest person ever to get a gene therapy that scientists hope will cure the disease, which afflicts 100,000 Americans.https://www.nytimes.com/2020/01/11/health/sickle-cell-disease-cure.html New Podcast – Sickle Cell Disease: Give Blood, Save a LifeCDC is proud to [...]

Sickle Cell News for January 2020

By shari.ann.wejsa@emory.edu On January 12, 2020 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ Two New Drugs Help Relieve Sickle-Cell Disease. But Who Will Pay? The Food and Drug Administration recently approved two transformative new treatments for sickle-cell disease, the first in 20 years. But the drugs are wildly expensive, renewing troubling questions about access to cutting-edge medicines. Adakveo, made by Novartis, can [...]

Sickle Cell News for December 2019

By shari.ann.wejsa@emory.edu On December 4, 2019 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ FDA approves novel treatment to target abnormality in sickle cell disease – November 25, 2019 https://www.fda.gov/news-events/press-announcements/fda-approves-novel-treatment-target-abnormality-sickle-cell-disease Today, the U.S. Food and Drug Administration granted accelerated approval to Oxbryta (voxelotor) for the treatment of sickle cell disease (SCD) in adults and pediatric patients 12 years of age and older. “Today’s [...]

Sickle Cell News for November 2019

By shari.ann.wejsa@emory.edu On November 14, 2019 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ NIH launches new collaboration to develop gene-based cures for sickle cell disease and HIV on global scale Initial investment aims to advance accessible and scalable candidate interventions into clinical trials within 10 years. https://www.nih.gov/news-events/news-releases/nih-launches-new-collaboration-develop-gene-based-cures-sickle-cell-disease-hiv-global-scale The National Institutes of Health plans to invest at least $100 million over the next [...]

Sickle Cell News for October 2019

By shari.ann.wejsa@emory.edu On October 6, 2019 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ https://www.hematology.org/Advocacy/Policy-News/2011/938.aspx Presidential Message on National Sickle Cell Disease Awareness Month https://www.whitehouse.gov/briefings-statements/presidential-message-national-sickle-cell-disease-awareness-month-2/ National Sickle Cell Disease Awareness Month is a time to acknowledge the challenges faced by Americans with sickle cell disease (SCD) and to reaffirm our commitment to increasing the quality, affordability, and accessibility of different treatment options. [...]

Sickle Cell News for September 2019

By shari.ann.wejsa@emory.edu On September 10, 2019 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ September is Sickle Cell Awareness Month https://www.hematology.org/Advocacy/Policy-News/2011/938.aspx Sickle Cell Disease Still Tends to Be Overlooked https://www.nytimes.com/2019/08/05/upshot/sickle-cell-disease-overlooked.html There is a question about what role race and wealth play in how much attention and funding the disease receives. CRISPR Gene Editing Is Being Tested in Human Patients, and the Results Could [...]

Sickle Cell News for August 2019

By shari.ann.wejsa@emory.edu On August 5, 2019 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ In A 1st, Doctors In U.S. Use CRISPR Tool To Treat Patient With Sickle Cell Disease https://www.npr.org/sections/health-shots/2019/07/29/744826505/sickle-cell-patient-reveals-why-she-is-volunteering-for-landmark-gene-editing-st or the first time, doctors in the U.S. have used the powerful gene-editing technique CRISPR to try to treat a patient with a genetic disorder. “It is just amazing how far [...]

Sickle Cell News for July 2019

By shari.ann.wejsa@emory.edu On June 28, 2019 · Add Comment · In Newsletter, Uncategorized

To join or leave the listserv visit https://scinfo.org/newsletter/ Six essential updates for World Sickle Cell Day World Sickle Cell Day is held every June 19. The observance — established by the United Nations — is designed to increase knowledge and understanding of sickle cell disease, as well as the challenges that patients, their families and [...]

Sickle Cell News for June 2019

By shari.ann.wejsa@emory.edu On June 17, 2019 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ The Sickle Cell Awareness Group of Ontario (SCAGO) invites you to its World Sickle Cell Day (June 19) Events What: World Sickle Cell Awareness Day Celebrations Where: 1st Floor, Hollywood Daniels Theatre (Rm 1246, Black Wing) 1st Floor, Rotunda (adjacent to Black Wing Elevators). The Hospital for Sick Children. 555 University Avenue. Toronto, ON.When: 12 [...]

Sickle Cell News for May 2019

By shari.ann.wejsa@emory.edu On May 6, 2019 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ Insurers’ Denials of Opioid Coverage Spurs CDC to Clarify Guidelines By Amy Norton HealthDay Reporter https://www.usnews.com/news/health-news/articles/2019-04-09/insurers-denials-of-opioid-coverage-spurs-cdc-to-clarify-guidelines TUESDAY, April 9, 2019 (HealthDay News) — People with severe pain from cancer or sickle cell anemia should not be denied coverage for opioid painkillers, a new clarification on federal guidelines [...]

Sickle Cell News for April 2019

By shari.ann.wejsa@emory.edu On April 2, 2019 · Add Comment · In Newsletter, Uncategorized

To join or leave the listserv visit https://scinfo.org/newsletter/ 60 Minutes airs: Gene Therapy for Sickle Cell Disease https://www.cbs.com/shows/60_minutes/video/kaxgqzPGVQulVXxP2ilWPqMZvWeraYeq/could-gene-therapy-cure-sickle-cell-anemia-/ Could gene therapy cure sickle cell anemia? An NIH clinical trial is ushering in a genetic revolution as an innovative type of gene therapy is used to attempt to cure sickle cell anemia. Dr. Jon LaPook reports. [...]

Sickle Cell News for March 2019

By shari.ann.wejsa@emory.edu On March 5, 2019 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ Dr. Doris Wethers, 91, on Front Lines Against Sickle Cell, Dies https://www.nytimes.com/2019/02/07/obituaries/dr-doris-wethers-on-front-lines-against-sickle-cell-dies-at-91.html Dr. Doris L. Wethers, who broke racial barriers in the medical world before gaining renown for research and advocacy that helped lead to mandatory testing of all newborns for sickle cell anemia, died on Jan. 28 [...]

Sickle Cell News for February 2019

By shari.ann.wejsa@emory.edu On February 5, 2019 · Add Comment · In Newsletter

To join or leave the listserv visit https://scinfo.org/newsletter/ 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. Carmen Duncan, 20, of Charleston, S.C., had her spleen removed when [...]

Sickle Cell News for December 2018

By Erin Hecht On November 30, 2018 · Add Comment · In Newsletter

To join or leave the listserv, visit https://scinfo.org/newsletter/ News New information about sickle cell trait The November 3rd issue of Annals of Internal Medicine published a comprehensive review article by leading sickle cell experts from around the US. They reviewed all of the relevant published evidence about the health outcomes of those with [...]

Available Scholarships for Student Caregivers

By Erin Hecht On November 9, 2018 · Add Comment · In Patients and Families - Other, Teachers and Students - General Information

List of Available Scholarships for Student Caregivers | The Caring.com Scholarship | Caring.com is a leading online destination for caregivers seeking information and support as they care for aging parents, spouses, and other loved ones. We offer thousands of original articles, helpful tools, advice from more than 50 leading experts, a community of caregivers, and a comprehensive directory of caregiving services.

Sickle Cell News for November 2018

By Erin Hecht On November 6, 2018 · Add Comment · In Newsletter

To join or leave the listserv, visit https://scinfo.org/newsletter/ News NIH launches initiative to accelerate genetic therapies to cure sickle cell disease https://www.nih.gov/news-events/news-releases/nih-launches-initiative-accelerate-genetic-therapies-cure-sickle-cell-disease The National Institutes of Health announced the launch of a new initiative to help speed the development of cures for sickle cell disease, a group of inherited blood disorders affecting at [...]

Sickle Cell News for October 2018

By Erin Hecht On October 3, 2018 · Add Comment · In Newsletter

Sickle Cell News for September 2018

By Erin Hecht On August 30, 2018 · Add Comment · In Newsletter

To join or leave the listserv, visit https://scinfo.org/newsletter/ News The American Society of Hematology is seeking comments on draft clinical practice guidelines on sickle cell disease-related transfusion support. Materials are available at www.hematology.org/Guidelines-Public-Comment. The deadline to comment is Monday October 1, 2018. This comment period is open to all ASH members and the [...]

Sickle Cell News for August 2018

By Erin Hecht On August 2, 2018 · Add Comment · In Newsletter

To join or leave the listserv, visit https://scinfo.org/newsletter/ News Therapy with L-Glutamine reduces pain in patients with sickle cell disease https://www.ucsf.edu/news/2018/07/411221/new-study-shows-l-glutamine-decreases-sickle-cell-pain-crises-hospitalizations CSF Benioff Children’s Hospital Oakland clinical researchers, in conjunction with other sickle cell centers and scientists at Emmaus Life Sciences, Inc., have demonstrated that therapy with L-Glutamine reduced the frequency of pain [...]

Sickle Cell News January 2021

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Sickle Cell News for December 2018

Available Scholarships for Student Caregivers

Sickle Cell News for November 2018

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