The Sickle Cell Warriors Convention is a national community gathering, created and organized entirely by sickle cell patients and caregivers. Each year the Convention is hosted by a partnership of sickle cell CBOs, patients, caregivers and advisors, and is unique in that every session, presentation, panel and workgroup was chosen directly by the patient community to educate, empower and encourage ourselves and each other. Over 100 scholarships were awarded to warriors and caregivers, including nearly 90 full scholarships, during the 2018 Convention.

When:
July 24 - 28, 2019

Where:
Hilton Granite Park
5805 Granite Parkway
Plano, Texas, United States

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Tuesday June 19th is World Sickle Cell Day! Come visit us at Sickle Cell Disease Association of Illinois's (SCDAI's) new location! Join us for yoga, sickle cell screenings, blood drive, be the match bone marrow registry, health eating tips, medical research update and much more!

When:

Tuesday, June 19, 2018 from 12:00 PM to 7:00 PM CDT

Where:

Sickle Cell Disease Association of Illinois 

8108 S WESTERN AVE.

CHICAGO, IL 60620, United States

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A Britain's Got Talent contestant whose choir moved judges to tears during their audition has revealed how she turned to singing following the death of her six-year-old son.

Simonne Kerr, 31, of London, joined NHS choir B Positive after losing her son Kavele to complications arising from sickle cell disease, an inherited blood disorder, in 2015.

The choir was created by NHS Blood and Transplant to raise awareness of blood donation and to bring together people whose lives are affected by the 'lifesaving power of blood', including medics, donors and patients with blood conditions.

CIRM – California's Stem Cell Agency – is hosting a special ‘Ask the Expert’ event on Facebook Live. The topic is Stem Cells and Stroke.

Just head over to our Facebook Page (California Institute for Regenerative Medicine) on May 31st from noon till 1pm (PDT) to experience it live. 

We will be joined by Dr. Gary Steinberg, chair of neurosurgery at Stanford University, who will talk to us about his work in helping reverse the damage caused by a stroke, even for people who experienced a brain attack several years ago.

CIRM Senior Science Officer, Dr. Lila Collins, will talk about other stem cell research targeting stroke, its promise and some of the problems that still need to be overcome.

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Camp Sickle Stars is the only camp in the state of Mississippi that is exclusively for children with Sickle Cell Disease. MS Sickle Cell Foundation funds Camp Sickle Stars through various fundraisers and donations.  The camp is free to all children between the ages of 6-14 and transportation is available for those who need it.

Date:

June 17-20, 2020

Despite universal newborn screening that detects the presence of sickle cell trait (SCT), only 16 percent of Americans with SCT know their status. To address this issue, in Ohio, in-person education is offered to caregivers of referred infants with SCT.

“Most people do not know their sickle cell trait status. When a newborn screening result shows that an infant has sickle cell trait, we are there to support the parents with education about SCT and its implications on reproductive health,” says Susan Creary, MD, hematologist at Nationwide Children’s Hospital. “But, to be effective, this education must be appropriate and meet the needs of the parents that we are educating.”

In a study published in Molecular Genetics & Genomic Medicine, Dr. Creary and her colleagues investigated the effectiveness of this standardized education at a single institution.

Novo Nordisk inked a global licence deal with biotech company EpiDestiny for sickle cell disease ("SCD") program EPI01.

Per the deal, EpiDestiny will receive more than $400 million in upfront, development and sales milestone payments and will also get royalties on net sales. EpiDestiny retains all rights to continue development of EPI01 in oncology. EpiDestiny and Novo Nordisk will jointly develop EPI01 for SCD and beta-thalassaemia.

EPI01 is a novel, orally available, disease-modifying therapy to increase foetal haemoglobin (HbF) and interrupt SCD pathophysiology. EpiDestiny recently completed a phase I study with EPI01 in SCD patients demonstrating increased HbF expression and safety after eight weeks of administration in a small patient cohort.

Sancilio Pharmaceuticals Company, Inc. (SPCI) today announced that the European Commission has granted Orphan Designation in the European Union to Altemia, the Company’s novel oral formulation being developed for the treatment of SCD in pediatric patients. This approval follows a positive opinion in February 2018 from the European Medicine Agency’s (EMA) Committee for Orphan Medicinal Products (COMP).

Orphan Designation is granted by the European Commission to drugs that are intended for the treatment, prevention or diagnosis of life-threatening or chronically debilitating rare diseases. Rare diseases are those defined as having a prevalence of not more than five per 10,000 population in the European Union. The designation potentially qualifies the sponsor for ten years of marketing exclusivity upon approval, as well as fee reduction for various centralized activities, including applications for marketing authorization, inspections and protocol assistance.

The 51st Annual National Convention will be held October 11-14 at the Crystal Gateway Marriott in Arlington, Virginia. 

For those who cannot attend in person, many of our convention components will be offered virtually. Virtual registration is coming soon.

For the first time since 2019, the Sickle Cell Disease Association of America’s (SCDAA) Annual National Convention will be held in-person in Arlington, Virginia! This year’s theme, "CommUNITY: Together on the Path to Progress,” highlights the importance of working together as we move into a new era of sickle cell history.

SCDAA invites you to join hundreds of health care professionals, advocates, warriors, caregivers, researchers, industry leaders, advocates and community-based organizations from throughout the nation and around the world on Wednesday, October 11 through Saturday, October 14 for an engaging and educational multidisciplinary conference.

The conference addresses the multifactorial aspects of sickle cell disease (SCD) and sickle cell trait (SCT). We work together to foster the exchange of the latest scientific and clinical information related to the disease through innovative symposia, training seminars, interactive panel discussions and special events.

Attendees can connect and interact with health care leaders and professionals. You will leave with new relationships, knowledge, inspiration and resources.

We are in a historic time in the sickle cell field with new efforts in research and treatment ongoing. SCDAA has been the leading advocacy voice in these advances. The Annual National Convention is one of the premier sickle cell disease events that offers myriad activities designed to educate and motivate the entire community.

For over 50 years, SCDAA has provided national leadership in partnership with its more than 50 member organizations and affiliates across the country. Together, we create awareness of the impact of SCD on the health, economic, social and educational well-being of individuals and their families. Our collective efforts have provided effective direction in positioning SCD as a recognized major public health care concern and a global issue.

You are invited to join SCDAA as a valued partner in building the next generation of leaders and a sickle cell disease-free future. SCDAA looks forward to seeing you at the 2023 Annual National Convention!

The Health Resources and Services Administration (HRSA), part of the U.S. Department of Health and Human Services, has awarded the Sickle Cell Disease Association of America (SCDAA) a $2.9 million annual grant for the next four years to establish a national infrastructure to ensure sickle cell disease (SCD) patients receive appropriate follow–up care services including counseling, education, and home care.

The grant was given through the HRSA’s Sickle Cell Disease Newborn Screening Follow-up Program.

As the lead organization behind HRSA’s Sickle Cell Disease Newborn Screening Program, SCDAA in the past two years has provided administrative and infrastructure support to 25 member and non-member CBOs in 19 U.S. states, enhancing their capacity. It launched a National SCD Community Health Workers Training Program and trained more than 85 CHWs. It also developed a shared management system to collect and analyze patient data for HRSA and to report data outcome measures.