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February 14, 2019February 14, 2019

Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide

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Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities aim to raise awareness about rare diseases and the millions of people — estimates run ... Read more

February 12, 2019February 12, 2019

ATS Releases Guidelines for Home Oxygen Therapy in Children with Sickle Cell Disease

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The American Thoracic Society (ATS) released a set of new guidelines for home oxygen therapy for children with chronic health conditions that cause a reduction in blood oxygen levels, ... Read more

February 7, 2019February 7, 2019

Emmaus Unveils Co-payment Assistance Program for SCD Endari Patients

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For eligible sickle cell disease (SCD) patients covered by commercial insurance, biopharmaceutical company Emmaus Life Sciences will offer financial assistance to those who need help covering their monthly Endari ... Read more

January 31, 2019January 31, 2019

FDA Revising ‘Draft Guidance’ on Developing Treatments for Rare Diseases

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The U.S. Food and Drug Administration(FDA) is updating its 2015 draft guidelines for drug discovery in rare diseases, with new guidance on natural history— how disorders such as spinal ... Read more

January 31, 2019January 31, 2019

Kids with Sickle Cell Anemia are More Sedentary than Healthy Peers, Study Suggests

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Children and adolescents with sickle cell anemia do less physical activity and have a more sedentary lifestyle than healthy controls, according to a study. The study, “Objectively measured physical ... Read more

January 29, 2019January 29, 2019

Registration Open for Sickle Cell Foundation of Georgia’s Annual Camp New Hope

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The Sickle Cell Foundation of Georgia (SCFG) will host its 42nd Annual Camp New Hope July 14-20 for youngsters living with sickle cell disease (SCD). The fun and enrichment ... Read more

January 24, 2019January 27, 2019

Vaso-Occlusive Pain Linked to Menstruation in Some Patients, Study Finds

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Acute vaso-occlusive pain is associated with the onset of menstruation, and about 25% of the women with sickle cell disease can differentiate these episodes from menstrual-cramp pain, a study ... Read more

January 22, 2019January 22, 2019

Safety and Early Hints of Benefit Seen in Phase 1b Trial of PF-04447943

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Sickle cell disease (SCD) patients were safely treated with a phosphodiesterase 9A (PDE9) inhibitor therapy called PF-04447943 with no serious side effects reported and possible evidence of fewer vaso-occlusion ... Read more

January 18, 2019January 18, 2019

Howard University President Launches ‘Run To Cure Sickle Cell’ Campaign

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Howard University President Wayne A.I. Frederick has unveiled a campaign to raise awareness and funds for the school’s Center for Sickle Cell Disease. “I am proud to officially launch the Run to ... Read more

January 15, 2019January 15, 2019

Randomized Trials Needed to Assess Benefits of Salmonella Vaccines in SCD Patients, Study Says

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Randomized controlled trials are needed to examine the benefits of vaccinating people with sickle cell disease (SCD) against salmonella infections, which can be particularly fatal to children with the ... Read more

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