The Sickle Cell Foundation of Georgia (SCFG) has partnered with Biotech Research Laboratories and the Phoenix Tears Foundation to raise money for the first clinical study focused on the effectiveness of cannabis oil in sickle cell disease (SCD)-related pain management.

The initiative is in honor of World Sickle Cell Day, held annually on June 19 to mark the day the United Nations General Assembly recognized SCD as a public health problem.

“We urge the Sickle Cell community, our friends and allies to join in supporting the coalition as we search for alternative treatments for those battling this painful and sometimes fatal condition,” Deb McGhee McCrary, SCFG president and CEO, said in a news release. “These trials will fully explore the pain relief properties of medical cannabis as an alternative to highly addictive opioids.”

Music therapy can help ease pain in adults with sickle cell disease (SCD), a pilot study showed. A single session of music improvisation with a music therapist helped significantly diminish the intensity of patients’ pain and uplift their moods, the study noted.

The research, titled “The Effects of a Single Electronic Music Improvisation Session on the Pain of Adults with Sickle Cell Disease: A Mixed Methods Pilot Study,” was published in the Journal of Music Therapy.

Many patients with sickle cell disease, particularly adults, often experience episodes of pain, including acute pain crises, chronic pain, and neuropathic (nerve) pain.

Pain can result from chronic inflammation due to the obstruction of blood circulation by sickled red blood cells. Organ damage and increased sensitivity to pain due to the use of opioids as painkillers also can occur.

Other contributors include psychological, social, cultural, and spiritual factors.

Physicians who use stigmatizing language in their patients’ medical records could be affecting the care they receive for years to come, according to a new Johns Hopkins study.

Titled “Do Words Matter? Stigmatizing Language and the Transmission of Bias in the Medical Record,” and published in the Journal of General Internal Medicine, the study aimed to determine whether the language and descriptions used in patient records could perpetuate bias among doctors.

The study analyzed the notes and descriptions physicians had written during visits to a hypothetical patient at a large urban medical center. Researchers then assessed how the language used in the notes influenced the patient’s care and pain management.

Researchers at the Johns Hopkins School of Medicine used an experimental vignette study design, in which 413 residents and medical students were randomized to read one of two chart notes presenting medically identical information about a hypothetical 28-year-old patient with sickle cell disease (SCD) and chronic pain in his left hip.

A significant proportion of children with sickle cell disease (SCD) are not receiving key recommended vaccines on time or at all, according to a new study examining pneumococcal and meningococcal vaccinations among children in Michigan.

The study, “Pneumococcal and Meningococcal Vaccination among Michigan Children with Sickle Cell Disease,” was published in the Journal of Pediatrics.

The researchers sought to determine the proportion of children with SCD compared to kids without the condition in Michigan who were vaccinated according to pneumococcal vaccination recommendations and, secondarily, to examine meningococcal vaccination.

The study included children born in the state of Michigan between April 1, 1995, and January 1, 2014. A total of 1,022 children with sickle cell disease were matched to 3,725 children without SCD using age, sex, race, and zip code.

During this interactive live webinar, instructor Ryan Drozd will offer some insights into the benefits of yoga for chronic pain and how to find a studio and classes that are appropriate for your health situation. He’ll also lead participants in a 20-minute chair yoga session, which is suitable for all levels of ability.

More about Ryan:
Ryan Drozd is a National Academy of Sports Medicine-Certified Personal Trainer and Fitness Nutrition Specialist, RYT-200 Yoga Alliance Teacher, Licensed Massage Therapist, and Reiki Master. He has been coping with chronic upper back pain, neck pain, and rib pain for over seven years, which led him to begin learning anything and everything related to wellness. His goal is to provide others with viable options for pain relief through sharing his personal experiences. In his spare time he enjoys reading, yoga, cooking, and almost anything outdoors. Ryan is also an ambassador for the U.S. Pain Foundation.

When:
Tuesday, Jan 21, 2020
1:00 PM - 2:00 PM EST

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Rare family, we are back in person! The 2022 Living Rare, Living Stronger Patient and Family Forum will bring the rare disease community together in Cleveland, Ohio for a day of learning, networking, discussion, and the Rare Impact Awards, presented live at the incredible Rock and Roll Hall of Fame in downtown Cleveland!

The health, safety and comfort of attendees and the rare community are NORD’s number one priority, so please review our event guidelines and check back often for more information and updates from the NORD team.

Date:

June 26, 2022

Location:

InterContinental Cleveland Conference Center

9801 Carnegie Avenue

Cleveland, Ohio, United States

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January 16, 2020
2:00 – 3:00 PM ET

We welcome interested stakeholders, patients, advocates, caregivers and families to join a webinar providing information about the metric used to assess the value of health care treatments called the quality-adjusted life year or “QALY” as well as the primary organization conducting QALY-based value assessments called the Institute for Clinical Economic Review (ICER). Because ICER will assess the value of new sickle cell disease treatments in March, 2020, it is important for all stakeholders to understand QALYs, ICER and how those value assessments may be used by public and private payers in their decisions related to drug coverage and formularies.
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We are excited to have Sara van Geertruyden with the Partnership to Improve Patient Care (PIPC) join us to present information about QALYs and ICER. Other stakeholders will provide specific information about their experience with ICER so far as they determine the scope of their upcoming report, the sickle cell disease treatments under review, and an overview of treatments in the development pipeline.

This event has ended.

Helen Obando, a shy slip of a girl, lay curled in a hospital bed in June waiting for a bag of stem cells from her bone marrow, modified by gene therapy, to start dripping into her chest.

The hope was that the treatment would cure her of sickle cell disease, an inherited blood disorder that can cause excruciating pain, organ damage and early death.

Sedated with Benadryl to prevent an allergic reaction to the garlicky-smelling preservative in the drip, Helen, who at 16 was the youngest person ever to undergo the therapy, was sound asleep for the big moment.

“Wake up,” her younger brother, Ryan, said, shaking her leg so she could push the button to start the drip. But she could not be roused, so he pushed it himself.

Our training program covers the core competencies of community health workers, and includes additional concentration on sickle cell disease. Virtual lectures, online in-class assignments and homework provide a wide array of learning opportunities.

Sickle Cell Disease Community Health Worker Training
September 13, 2021 – November 29, 2021

Deadline to apply: September 3, 2021

Cost of Training: $1,060

A limited number of scholarships are available.

The course is offered completely online. At the conclusion of the course, students must pass a final exam.

Click here to signup online.

This event has ended.

Cost: Free
Monthly sessions
12–1 p.m. EST
Zoom online training

The P.O.W.E.R ECHO Project Community Health Worker Training is designed to assist community health workers with resources and education, in order to strengthen their efforts in providing support services for sickle cell disease (SCD) patients. P.O.W.E.R ECHO Project uses the ECHO telecommunication model to reach community health workers by offering online training services on emerging and current topics in sickle cell disease.

The P.O.W.E.R. training for Community Health Workers (CHWs) is designed to provide CHWs working in the SCD community with further resources and educational tools to strengthen their efforts in providing supportive services for sickle cell disease patients and their families.

The P.O.W.E.R ECHO Project uses the ECHO telecommunication model to bridge CHWs from various regions in professional development sessions focused on current and emerging sickle cell disease topics through training and case study discussions.

Upcoming Session:

Thursday, March 21 | 12-1 p.m. EST
Topic: CHW in the Virtual Space with Patients with No Internet Access
Monica Rockwell, Executive Director, SWGA Sickle Cell Awareness
Click here to register