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Sickle Cell Forum Administrator started the topic It's Difficult to Manage Sickle Cell Pain at Home During a Pandemic in the forum Diagnosis Information and General Questions 1 month, 2 weeks ago
Treating her sickle cell pain at home with opioids is challenging, but a pandemic adds even more complexity, says columnist Mary Shaniqua. Click here to read more from Mary.
What did you think of this column? Can you relate to Mary?
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Sickle Cell Forum Administrator started the topic VEST Lowers Duration of Painful Sickle Cell Disease Crises in the forum Diagnosis Information and General Questions 1 month, 2 weeks ago
A Phase 2 trial found that vascular electrical stimulation therapy (VEST) can lower the duration of painful vaso-occlusive crises in SCD patients. Click here to learn more.
What do you think of this news?
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Sickle Cell Forum Administrator started the topic Pink, Green, Blue, Purple Lights Illuminate World for Rare Disease Day in the forum Diagnosis Information and General Questions 1 month, 3 weeks ago
More than 450 monuments and landmarks around the world sported lights in the colors of Rare Disease Day on Feb. 28 to raise public awareness about sickle cell disease and other rare conditions. Click here to read more.
How did you celebrate RDD this year? Did your home community do anything to mark the occasion?
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Sickle Cell Forum Administrator started the topic Adakveo for SCD Being Tested in Series of Trials, Including at Higher Dose and in Children in the forum Diagnosis Information and General Questions 2 months, 3 weeks ago
Novartis is continuing to test Adakveo, approved to treat pain crises in sickle cell, at a higher dose, in kids, and in those with specific complications. Click here to learn more.
Did you enjoy this article?
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Sickle Cell Forum Administrator started the topic Adakveo, 1st Sickle Cell Treatment for Pain Crises in Teens and Adults, Approved by FDA in the forum Diagnosis Information and General Questions 3 months ago
Adakveo (crizanlizumab), which works to lower the frequency of painful vaso-occlusive crises (VOCs) common in sickle cell disease, has been approved by the FDA. Read the full story here.
What do you think of this news?
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Sickle Cell Forum Administrator started the topic LentiGlobin Gene Therapy Continues to Show Promising Results in SCD, Updated Trial Data Shows in the forum Diagnosis Information and General Questions 3 months ago
Bluebird Bio’s LentiGlobin continues to show promising results in SCD patients participating in a Phase 1/2 HGB-206 clinical trial, new data shows. Read more here.
What did you think of this article?
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Sickle Cell Forum Administrator started the topic HHS Secretary Alex Azar Touts White House Efforts In Sickle Cell Disease in the forum Diagnosis Information and General Questions 3 months ago
Alex Azar, the United States’ top health official, says the Trump administration made it a priority to extend the lives of Americans with sickle cell disease. Click here to find out more about what he said.
What do you think of Alex Azar’s comments?
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Sickle Cell Forum Administrator started the topic Longer Life Expectancy Possible for Some Sickle Cell Patients in the forum Diagnosis Information and General Questions 3 months, 1 week ago
A case study of four octogenarians reports that patients with mildly symptomatic sickle cell disease can exceed the U.S. median life expectancy of 47 years. Click here to learn more.
Did you enjoy this article?
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Sickle Cell Forum Administrator started the topic FDA Approves 1st Sickle Cell Treatment, Oxbryta, Targeting Root Cause of Disease in the forum Diagnosis Information and General Questions 3 months, 3 weeks ago
The FDA has given accelerated approved to oral Oxbryta (voxelotor), a once-daily treatment targeting sickle cell’s root cause, for patients ages 12 and up. Click here to read more.
What do you think of this news?
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Sickle Cell Forum Administrator started the topic Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients in the forum Diagnosis Information and General Questions 3 months, 3 weeks ago
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, a Eurordis international survey found. Click here to read the full story.
Are these findings surprising to you? Why or why not?
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Sickle Cell Forum Administrator started the topic Gates Foundation, Novartis Working on Affordable Gene Therapy for Sickle Cell in the forum Diagnosis Information and General Questions 3 months, 4 weeks ago
The Bill and Melinda Gates Foundation is supporting work by Novartis to develop a more accessible gene therapy for all with sickle cell disease (SCD). Read more about it here.
Did you know about this initiative? What do you think about it?
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Sickle Cell Forum Administrator started the topic Here's How You Can Be a Better Partner for a Sickle Cell Patient in the forum Adults With Sickle Cell Disease 3 months, 4 weeks ago
What did you think of Mary’s advice? Did you find it helpful? Do you have anything to add?
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Sickle Cell Forum Administrator started the topic Rare Disease Day at NIH, Set for March 1, Growing Year by Year in the forum Diagnosis Information and General Questions 4 months ago
In the U.S., the National Institutes of Health will recognize Rare Disease Day with daylong educational and personal online presentations. Click here to check out the full agenda.
What are your plans for Rare Disease Day 2021?
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Sickle Cell Forum Administrator started the topic NORD’s 6th 'State Report Card' Notes Progress, Raises Concerns in the forum Diagnosis Information and General Questions 4 months ago
NORD’s 6th ‘State Report Card’ on policy issues critical to U.S. rare disease patients notes some progress but raises concerns. Click here to find out more.
Did anything in this report card surprise you?
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Sickle Cell Forum Administrator started the topic NHLBI Challenges Students to Develop Tools to Raise SCD Awareness in the forum Diagnosis Information and General Questions 4 months, 1 week ago
The NHLBI is challenging college and graduate students to create innovative tools to spread evidence-based information about SCD. There are more than $50,000 worth of prizes to be won. Click here to find out more.
Do you know of any students who should enter this challenge?
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Sickle Cell Forum Administrator started the topic The Pandemic Won’t Stop Rare Disease Day on Feb. 28 in the forum Adults With Sickle Cell Disease 4 months, 1 week ago
Which events interest you most? Which in-person events do you miss?
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Sickle Cell Forum Administrator started the topic It's OK to Take a Break From Raising Awareness About Sickle Cell Disease in the forum Adults With Sickle Cell Disease 4 months, 1 week ago
Raising awareness about sickle cell is important, but sometimes it’s just as important to slow down and take a step back. Click here to find out how Tito Oye approaches this challenge.
Can you relate to Tito’s experience? How?
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Sickle Cell Forum Administrator started the topic BCH-BB694 Gene Therapy Safely Treating Severe SCD Patients in Pilot Trial in the forum Diagnosis Information and General Questions 5 months ago
Interim Phase 1 trial data show BCH-BB694 safely increased fetal hemoglobin levels and prevented SCD complications in 6 patients with severe sickle cell. Read the full story here.
What do you think of this news?
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Sickle Cell Forum Administrator started the topic GBT Launches Early Access Program for Voxelotor in Europe, Other Regions in the forum Diagnosis Information and General Questions 5 months ago
Global Blood Therapeutics’ voxelotor is now available in Europe and other areas outside the U.S. for patients with hemolytic anemia associated with SCD. Read more here.
What do you think of this news?
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