One in 2,400 are born with sickle cell disease (SCD) in the U.S. As one of the most common inherited blood disorders, it is widely misunderstood. Last month, the Minnesota Sickle Cell Coalition — comprised of patients, doctors, healthcare providers, and advocates — co-sponsored a Sickle Cell Disease Stakeholder Forum at Sanctuary Covenant Church in North Minneapolis. Approximately 60 healthcare professionals and others attended the Dec. 10 event to not only help improve care for those afflicted by the disease but also to increase awareness of the disease, screening and healthcare disparities. SCD is a group of inherited red blood cell disorders including Sickle Cell Anemia (Hgb SS Disease), Hemoglobin SC Disease, and Hemoglobin Sickle Beta Thalassemia. People with sickle cell disease produce abnormal hemoglobin (Hgb S), which can interrupt blood flow and prevent oxygen from getting to important parts of the body. This can cause many potential health complications, including extreme pain, risk of stroke, and pulmonary hypertension.  

Camp New Hope is a seven-day; six-night residential camp for children ages 7-17 with sickle cell disease. Our mission is to provide an enriching experience that fosters independence, self-esteem, and friendships.

Camp New Hope offers campers the excitement and fun of a traditional summer camp in addition to the unique advantages of an environment and staff responsive to their unique health concerns. Campers enjoy a week of adventure while learning self-help, sickle cell disease management skills, and developing a more positive self-image. Campers are encouraged to explore a variety of interests including swimming, canoeing, tennis, climbing, and arts and crafts.

Date:
July 17, 2022 – July 23, 2022

 

This event has ended.

 

Brunel Etienne says one his childhood dreams has come true thanks to New England Patriots free safety Devin McCourty. "I got two Super Bowl tickets from Devin McCourty. I was completely awestruck," Brunel said.

The 26-year-old was born with sickle cell anemia, an inherited life-threatening blood disease common among African Americans. Brunel actually suffered a severe stroke when he was young. "One big stroke where my whole left side was paralyzed," he said. "Now my left side is weaker than my right side."

The McCourty twins have made it their mission to help tackle sickle cell. Some of their relatives also have the disease. Recently Devin invited Brunel to Gillette Stadium and surprised him with two tickets to Super Bowl LIII. "I always wanted to go to the Super Bowl but never thought it would come so soon," Brunel said.

 

The Chicago Sickle Cell Summit convenes stakeholders and providers from health system leadership, primary and specialty care, and the sickle cell community for updates in sickle cell care. Our goal is to create synergy to improve care for sickle cell patients across Chicago. Lunch will be served. Hourly-rate parking is available in the UI Health parking facility on Wood and Fillmore Streets. Street parking is available on both Wood and Washburne Streets, immediately surrounding the Mile Square Health Center building. Date and Time: Thu, February 28, 2019 12:00 PM – 5:00 PM CST Location: Mile Square Health Center 1220 South Wood Street 3rd floor Chicago, Illinois, United States   This event has ended.  

The EveryLife Foundation for Rare Diseases and Global Genes have made the decision to postpone our RARE on the Road events in Raleigh, NC (originally planned for March 28th). We have made this decision out of an abundance of caution regarding COVID-19, and to prioritize the health and safety of our event attendees.

It is our hope to reschedule the event for the summer of 2020.

 

Please stay tuned for further updates.

Viewers and people with sickle cell disease have praised TV show Call The Midwife for its storyline portraying the condition.

In Sunday's episode, which is set in 1964, characters Dr Turner and Nurse Trixie Franklin discover that a mysterious disease affecting a young Ghanaian family was a genetic blood disorder.

But it didn't take long for viewers on social media to spot the symptoms and diagnose the condition as sickle cell.

Many took to social media to praise the period drama for its portrayal of the disease.

 

The U.S. opioid epidemic is not linked to higher in-hospital mortality in patients with sickle cell disease (SCD), according to a national study.

The study came about due to the pronounced increase in opioid-related overdoses and deaths in the U.S. that has been reported since 2000. Its researchers did find increased hospitalization rates in young adult and elderly SCD patients, but not in deaths linked to opioids used to control disease-related pain.

“Opioid Use Is NOT Associated with in-Hospital Mortality Among Patients with Sickle CELL Disease in the United States: Findings from the National Inpatient Sample,” was recently presented at the 60th American Society of Hematology (ASH) Annual Meeting, in San Diego.

 

Bluebird bio presented new positive results from the ongoing Phase 1/2 HGB-206 clinical trial evaluating the effectiveness and safety of investigational gene therapy LentiGlobin in patients with severe sickle cell anemia.

The company had previously revealed findings from the trial at the end of last year and earlier this year. The new results reflect data collected through September 14.

Results were introduced at the recent 60th Annual Meeting of the American Society of Hematology in San Diego, under the abstract name “Current Results of LentiGlobin Gene Therapy in Patients with Severe Sickle Cell Disease Treated Under Refined Protocol.”

 

Daily tasks most people don't think too much about, such as eating breakfast, drinking water or even sitting too long, are always top of mind for Jermaine O'Connor.

The 26-year-old has sickle-cell anemia, a genetic blood disorder that can lead to a number of complications, and not taking care of his health can exacerbate his condition, including his chronic pain.

"It can always feel like a very solitary experience," he said. "It actually spills over into sort of everything you like to do or want to do."

O'Connor has had chronic pain since childhood. He'll typically feel it in his hands, arms and legs, but it's hard to predict, and can last from hours to days.

 

The U.S. Food and Drug Administration (FDA) has awarded fast track status to investigational therapy CTX001 to treat sickle cell disease.

A Phase 1/2 clinical trial (NCT03745287) is recruiting patients.

CTX001 uses the CRISPR gene-editing technology to increase the production of fetal hemoglobin in patients’ red blood cells.

Fetal hemoglobin is a form of hemoglobin that naturally exists when one is born and later is replaced by the adult form of hemoglobin.

For the treatment, doctors collect a patient’s own hematopoietic stem cells (cells from the bone marrow) and modify them in the laboratory so they can produce high levels of fetal hemoglobin.