Acupuncture may be a useful add-on therapy to help manage pain in children and adolescents who have sickle cell disease, a new study suggests. The study, “Acupuncture for pain management…
News
People with sickle cell disease (SCD) have a higher risk of bleeding from the upper portion of the gastrointestinal (GI) tract, possibly due to the use of certain anti-inflammatory medications and stress brought on by frequent hospitalizations, a study has found. The study, “…
The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly 7,000 rare diseases are still lacking treatment. And federal incentives to boost treatment development for these rare diseases have primarily focused not on creating new…
Children and adolescents with sickle cell disease (SCD) who lack vitamin D are hospitalized more often due to pain crises, have longer hospital stays, and make more frequent visits to the emergency room, a new study has found. The study, “The association between vitamin D…
The American Society of Hematology released new clinical guidelines on the use of blood transfusions in people with sickle cell disease (SCD). The transfusion guidelines are the second in a series of five therapy guidelines ASH is developing for SCD. Guidelines for managing heart and kidney disease…
In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…
Record numbers of patients and advocates from across the state of Georgia — which has the nation’s fourth-highest number of people with sickle cell disease (SCD) — turned out recently for the annual Sickle Cell Day at the State Capitol. The day’s annual meeting with legislators and healthcare providers…
Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those  looking to begin the complex process in its Feb. 20 webinar. William Whitman…
FT-4202, a potential disease-modifying oral treatment for sickle cell disease being developed by Forma Therapeutics, has been given fast track and rare pediatric disease designations by the U.S. Food and Drug Administration (FDA). A fast track status is meant to accelerate the development and review…
Recent Posts
- Adults with SCD face high risk of stroke in their 30s and 40s, study finds
- Sickle cell doctors face higher burnout than other specialists: Study
- Disease burden heavy for SCD patients in US, despite promise of gene therapy
- The conversation we avoid: Telling children they have sickle cell disease
- New study finds distinct molecular signatures in newborns with SCT
- Blood test may improve kidney damage detection in children with SCD
- Understanding the impact of leg ulcers in sickle cell disease
- Asthma seven times more likely in SCD children than in unaffected siblings
- Sickle cell drug at high dose eases anemia symptoms in severe SCD
- Researchers urge more talk on menstrual pain in sickle cell clinics