New National Media Partnership Will Enhance Awareness Efforts and Increase Awareness about Sickle Cell Disease and Sickle Cell Trait
Sickle Cell Disease Association of America, Inc. (SCDAA) and BLACKDOCTOR.ORG are proud to announce a new media partnership that will enhance national awareness efforts about sickle cell disease (SCD). The partnership will use digital platforms, events and speaking opportunities to share educational information with individuals living with SCD and their families and the general public. The partnership will work to dispel myths about the disease and to share patient stories, treatment options, and initiatives happening within the sickle cell community. The partnership also will engage new audiences, create new media and public relations opportunities and help to break the silence surrounding the disease.
“SCDAA is very excited to announce this media partnership and the new opportunities we have together to help remove stigma and to share stories from those living with sickle cell disease,” said SCDAA President and CEO Beverley Francis-Gibson. “BLACKDOCTOR.ORG provides access to innovative new approaches to health information that helps individuals empower themselves by breaking through the health disparities and gaining better control of their health and well-being. SCDAA looks forward to working with BLACKDOCTOR.ORG to increase awareness about sickle cell disease and to encourage individuals to get involved in our efforts to advocate on behalf of those affected by this disease.”
“SCDAA and its chapters across the country have a long history of serving the sickle cell community through education, awareness and advocacy, and BLACKDOCTOR.ORG is proud to partner with them in our collective goals to empower individuals with their health by raising awareness about sickle cell disease,” said Reginald Ware, BLACKDOCTOR.ORG CEO. “Our media partnership seeks to help SCDAA broaden its reach into the African American community and to get people involved in an important cause. We are looking forward to supporting SCDAA and the sickle cell community in this collaborative initiative.”
About BLACKDOCTOR.ORG
BLACKDOCTOR.ORG is the all-important primary destination that redefines Black health. It aims to be a trusted, daily resource for healthier, happier living, and daily medicine. A Powerful Resource for Black Health BlackDoctor.org is the world’s largest and most comprehensive online health resource specifically targeted to African Americans. BLACKDOCTOR.ORG understands that the uniqueness of Black culture plays a role in our health. BLACKDOCTOR.ORG gives access to innovative new approaches to the health. Guided by the leading physicians, BLACKDOCTOR.ORG provides essential, but difficult to find, health resources, including free referrals to the top Black physicians and health articles that focus on both culturally accurate content and general health topics.
Monthly Archives: June 2019
Novartis Unveils “The Untold Stories of Sickle Cell Disease,” a worldwide patient story project.
On June 19, 2019, for World Sickle Cell Awareness Day, Novartis unveiled “The Untold Stories of Sickle Cell Disease,” a worldwide patient story project.
This unique program offers a powerful glimpse into the lives of people touched by sickle cell disease – how it affects their lives and how they work to overcome it. You can see and view the stories at www.UntoldSickleCellStories.com, along with disease education information.
You also can check out a 3-minute worldwide promo video at https://app.box.com/s/idrvk9nrr1fh97x5gr5ymw7iltpd2npa
Shine the Light on Sickle Cell” Campaign Celebrates the 10th Anniversary of World Sickle Cell Awareness Day
SiNERGe and Sickle Cell Disease Association of America, Inc. (SCDAA) are collaborating with sickle cell advocacy groups, community-based organizations, hospitals, governments and other key stakeholders in the sickle cell community on Shine the Light on Sickle Cell, a 24-hour awareness campaign to celebrate the 10th anniversary of World Sickle Cell Awareness Day on June 19, 2019.
June 19th was officially designated by the United Nations as World Sickle Cell Awareness Day. The international awareness day is observed annually with the goal to increase public knowledge and an understanding of sickle cell disease (SCD) and sickle cell trait (SCT), and the challenges experienced by patients and their families and caregivers. On June 19th and within the month of June, individuals and organizations are hosting a number of activities across the country.
“June 19 is a day of unity and purpose for the sickle cell community,” says Dr. Sophie Lanzkron, associate professor of medicine at the Johns Hopkins University School of Medicine and co-director of the SiNERGe collaborative. “We’re proud to work with the SCDAA to highlight the need for increased awareness about sickle cell disease and its impact on individuals and their families here in the U.S. and abroad.”
SCD is a global health problem affecting millions of people around the world. It is estimated that approximately 100,000 Americans have the disease, and more than 1,000,000 worldwide have sickle cell trait. Each year, approximately 1,000 babies in the United States are born with SCD, and there is no universal cure for this life-threatening disease.
“SCDAA is proud to collaborate with SiNERGe on this important national awareness campaign that has brought together the diverse stakeholders within the sickle cell community to create events, activities and opportunities to bring attention to sickle cell disease and to encourage individuals to get involved in our efforts to advocate on behalf of the those affected by this disease,” said SCDAA President and CEO Beverley Francis-Gibson.
Visit the Shine the Light on Sickle Cell Campaign Facebook page at www.facebook/com/pg/ShineTheLightOnSickleCell/events to learn about the events happening across the country on June 19 and in the month of June.
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GBT Awards More than $200,000 in Grants to Five Nonprofit Organizations through New ACCEL Program Aimed at Improving Access to Healthcare for People Living with Sickle Cell Disease
Innovative Healthcare Programs for Sickle Cell Community
On June 10, 2019, Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT) announced that five nonprofit organizations have been awarded more than $200,000 in grants through the company’s new Access to Excellent Care for Sickle Cell Patients Pilot Program (ACCEL).
Five grant recipients – the Center for Comprehensive Care and Diagnosis of Inherited Blood Disorders (CIBD) and the Sickle Cell Disease Foundation (SCDF), the James R. Clark Memorial Sickle Cell Foundation, The Johns Hopkins University School of Medicine, the MAVEN Project (Medical Alumni Volunteer Expert Network) and the Sickle Cell Foundation of Georgia – will each receive grants to accelerate the development of promising programs that have the potential over time to deliver high-quality healthcare to people living with sickle cell disease (SCD).
“We created the ACCEL program to help address the significant challenges that people living with SCD face every day in accessing quality healthcare in their communities. One solution to addressing these inequities is to encourage non-profit organizations to develop innovative programs that can ensure more children and adults living with SCD get access to high-quality care,” said Jung E. Choi, chief business and strategy officer, and head of patient advocacy and government affairs at GBT. “We are thankful to the many applicants who submitted compelling proposals.”
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Congressional Briefing on Progress in Sickle Cell Disease Treatment & Policy Implications
TUESDAY, JUNE 18, 2019 | 2:30 – 3:30 PM
DIRKSEN SENATE OFFICE BUILDING, ROOM G50
RSVP: Betsy Foss-Campbell, bfoss@asgct.org
Join us for updates on Gene therapy approaches presented by prominent scientists in the field
How policymakers can support the development of treatment options for sickle cell disease
SPEAKERS
Tim Scott, United States Senator
Francesca Cook, MPH, Government Relations Committee member, ASGCT; Senior Director, Pricing and Market Access, REGENXBIO
Julie Kanter, MD, Director of Adult Sickle Cell Program; Associate Professor of Hematology and Oncology, University of Alabama at Birmingham
Punam Malik, MD, Professor of Pediatrics, Marjorie Johnson Chair of Gene and Cell Therapy, Director, Cincinnati Comprehensive Sickle Cell Center; Cancer and Blood Disease Institute, Cincinnati Children’s Hospital
Rodrick Murray, Patient advocate providing a personal story on gene therapy’s value for treating sickle cell disease
Matthew Porteus, MD, PhD, Professor of Pediatrics (Stem Cell Transplantation), Stanford University
David Williams, MD, Senior Vice President and Chief Scientific Officer, Boston Children’s Hospital; Chief, Hematology/Oncology, Boston Children’s Hospital; President, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center; Leland Fikes Professor of Pediatrics, Harvard Medical School
How can policymakers help support the development of gene therapies for sickle cell disease?
- Support the need for robust NIH research funding
- Support appropriations to the sickle cell disease prevention and treatment program and implementation of new surveillance and screening authorities passed in 2018
- Enable novel payment models for approved gene therapies
Hosted in partnership with the Pediatric Hospital Sickle Cell Disease Collaborative and
