United to Conquer Sickle Cell Disease

SCDC Update, June 2018


World Sickle Cell Day is Tuesday, June 19th!


Sickle Cell Disease Coalition and ASH to Release Global Videos  

In honor of World Sickle Cell Day on June 19th, the Sickle Cell Disease Coalition (SCDC) and the American Society of Hematology (ASH) will be releasing two videos focused on promoting awareness about sickle cell disease and the need for newborn screening in sub-Saharan Africa.The SCDC video is a 30 second public service announcement (PSA) that directs people to a global library, which consists of relevant information for those in Africa seeking resources on SCD. The ASH branded video, a 10-minute short film, highlights the efforts currently underway in Ghana and how parents can ensure that their children with SCD get appropriate care. The SCDC’s PSA, as well as the global library can be found by visiting www.scdcoaltion.org/global

CDC to Share NEW Resources for Young Adults with SCD on June 19

In observance of World Sickle Cell Day, on June 19th, the Centers for Disease Control and Prevention (CDC) is sharing new resources on transition to help teenagers and young adults with sickle cell disease (SCD) ‘step up’ and take ownership of their own health. These resources aim to support and to empower young people with SCD to manage and to prioritize their health and well-being. One of the resources is Mikeia Green’s personal story of leaving home for college and of managing her disease by juggling doctor’s appointments, preparing herself for emergencies, and how she prioritizes her health, school, activities, and a new social life to stay healthy in college. The story will be available here. Don’t forget to follow CDC on Twitter @CDC_NCBDDD to stay-up-to-date on CDC’s activities and share new resources! 

“Sickle Cell Perspectives”- a World Sickle Cell Day Facebook Live Event    

Novartis will host Sickle Cell Perspectives, a worldwide Facebook Live panel discussion in observance of World Sickle Cell Day, June 19th. Sickle Cell Perspectives will bring together global experts and advocates to discuss the social and emotional impact of sickle cell disease and share stories about how the condition is shaping patients’ lives and their communities. The live broadcast will be in English with live translations available via dial-in in Arabic, French, Portuguese and Spanish. Questions will be taken from the online viewing audience. To learn more and share the event with your friends, check out the Facebook event page.


Texas Children’s Hospital Celebrates World Sickle Cell Day   

Texas Children’s Hospital, a member of the Pediatric Sickle Cell Collaborative, which is part of the Sickle Cell Disease Coalition, will be hosting its second annual World Sickle Cell Day event for patients, families, and healthcare providers. The event will include remarks from Dr. Stephen Williams, the director of the Houston Health Department, as well as a review of SCD research, community, and global efforts. The event will also include one family’s personal story about their time at the Texas Children’s Sickle Cell Center. For more information about this event, click here

“Go Red” for World Sickle Cell Day: Celebrating Our Victories Together 

The Sickle Cell Disease Association of America, Inc. (SCDAA) is launching its “Go Red” campaign for World Sickle Cell Day on June 19th.  Wear red to celebrate the victories of the entire sickle cell disease community. SCDAA is encouraging people to post their “Go Red” photos on social media on June 19th and use the hashtags #SCDAA and #GoRedSCD, so posts can be acknowledged.

Howard University’s 5th Annual World Sickle Cell Awareness Day Legislation and Advocacy Symposium 

Sickle Cell Disease Association of America, Inc. (SCDAA) is participating in Howard University Center for Sickle Cell Disease’s World Sickle Cell Day Symposium on June 19th, World Sickle Cell Day from 1 to 4:00 p.m. – at the Howard University Hospital in Washington, DC. Speakers will include SCDAA’s President/CEO Beverley Francis-Gibson and Dr. Sophie Lanzkron, Associate Professor of Medicine at Johns Hopkins University. To see the event agenda, click here.

Global Sickle Cell Disease Network Launches New Website

The Global Sickle Cell Disease Network (GSCDN) recently announced the launch of its new website, which includes a platform of resources on sickle cell disease (SCD) treatment, education and research, specifically targeting low and middle-income countries.  The new website features an interactive map of SCD treatment centers, including information about clinical and laboratory services offered at each center, and contact information at each site. GSCDN is also now on Twitter and can be followed @GlobalSCDN.  Join GSCDN on Twitter on Thursday, June 14th for the official launch of its new website, and on Tuesday June 19th for World Sickle Cell Awareness Day.

Be There for Someone Else. Give Blood. Share Life.

Every year on June 14, countries around the world celebrate World Blood Donor Day. The event serves to thank voluntary, unpaid blood donors and raises awareness of the need for regular blood donations. More than seven million Americans choose to voluntarily donate blood each year to meet the need for more than 11 million blood transfusions. A robust blood supply is required for acute care needs and to help patients suffering from life-threatening conditions, including Sickle Cell Disease. This year, World Blood Donor Day holds special significance to the Capitol Hill community as the anniversary of the shooting at the congressional baseball practice. During that terrible event, several individuals suffered significant injuries, including U.S. House of Representatives Majority Whip Steve Scalise (R-LA), who required blood transfusions to save his life. To recognize the importance of blood donation, members of the Republican and Democrat congressional baseball teams have joined together in a bipartisan, bicameral effort to promote World Blood Donor Day, blood donors, and the vital work of independent blood centers. 

Ironwood Pharmaceuticals Announces FDA Orphan Drug Designation

Ironwood Pharmaceuticals was granted Orphan Drug Designation to olinciguat (IW‐1701) for the treatment of patients with sickle cell disease. Olinciguat is an orally administered soluble guanylate cyclase (sGC) stimulator. “The orphan drug designation adds momentum to our clinical program investigating olinciguat, which has the potential to improve multiple aspects of sickle cell disease pathophysiology,” said Christopher Wright, MD, PhD, Senior Vice President of Global Development and Chief Development officer. To read the full announcement, click here.

Sickle Cell Testing in Enugu, Nigeria 

Thirty doctors from University of Nigeria Teaching Hospital Enugu collected blood samples for sickle cell disease (SCD) testing from about 1,600 students and staff from nine schools in Ogbunka, Anambra State, Nigeria, on Tuesday June 5th. The samples are currently being analyzed in the hematology laboratory of the University Hospital. This was the first field trip in a three-year sickle cell project by the Rotary Clubs of Newport-Irvine, USA and Enugu, Nigeria. 

Indiana Hematologist Hits the Road to Prevent Children from Having Strokes

Dr. Emily Meier of the Sickle Transplant Alliance for Research, a member of the SCDC, travels two hours to run a clinic for children diagnosed with sickle cell disease (SCD). While she normally works in Indianapolis, Indiana, she learned that doctors in Lake County, Indiana were not regularly screening children with SCD for stroke which became part of the reason why Dr. Meier and her team started traveling to Lake County to provide medical care. “People in Lake County are not getting the same level of healthcare that the rest of the state is getting and that’s because there’s no board-certified hematologist up here to give that level of care,” she said. Read more here.  

Upcoming SCD Events


2018 Foundation for Sickle Cell Disease Research and Educational Symposium 

The Foundation for Sickle Cell Disease Research (FSCDR) is committed to supporting innovative research in sickle cell disease (SCD) to help maximize quality of life and improve survival for the generations of people affected by SCD. The next annual FSCDR symposium will take place June 15-17, 2018 in Washington, DC. Learn more and register today. 

Terumo BCT Lunch During the 2018 FSCDR Symposium 

Terumo BCT will be hosting an industry sponsored lunch time symposia entitled Experience with Chronic Red Cell Exchange in the Adult Clinic Setting during the upcoming Foundation for Sickle Cell Disease Research’s 12th Annual Sickle Cell Disease Research and Educational Symposium. The event will be held on Saturday June 16th, during the lunchtime break and is open to all registrants. Speakers include Ifeyinwa (Ify) Osunkwo, MD, MPH (Levine Cancer Institute / Atrium Health), and Naresh Bumma, MD (Karmanos Cancer Institute-Wayne State University). 
 

Patient Focused Drug Development for Chronic Pain Public Meeting

The Food and Drug Administration (FDA) will be hosting a public meeting on July 9, 2018 at FDA’s White Oak Campus in Silver Spring, MD from 10a.m. to 4 p.m. The public meeting will provide patients (including adult and pediatric patients) with an opportunity to present to FDA their perspectives on the impacts of chronic pain, views on treatment approaches for chronic pain, and challenges or barriers to accessing treatments. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal antiinflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies. For more information about this meeting, click here


SCDAA 46th Annual National Convention 

The Sickle Cell Disease Association of America (SCDAA)’s 46th Annual National Convention will take place October 13-18, 2018 in Baltimore, MD. This year’s theme is Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice. The SCDAA Annual National Convention is a four-day conference designed to address the multi-factorial aspects of sickle cell disease (SCD). The conference fosters the exchange of the latest scientific and clinical information related to the disease which is achieved through the offering of innovative symposia, training seminars, and interactive panel discussions. In addition, this year’s convention offers an array of exciting activities designed to educate and motivate the entire community to get involved in the fight against SCD. The convention is aimed at individuals living with SCD and sickle cell trait, their family members, physicians, researchers, nurses, social workers, psychologists, and community health workers. Click here to find out more, and to register.  

Additional details will be forthcoming. If you have any questions please send them to Rusinel.amarante@nih.gov or Jessica.peterson2@nih.gov

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