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Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US
It took one year for Dona Krystosek to get a diagnosis for her son, Levi, ...
More from Sickle Cell Disease News
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Gene Therapy LentiGlobin Granted Priority Medicines Designation for SCD in EU
Bluebird Bio’s investigational gene therapy LentiGlobin has been granted priority medicines (PRIME) designation by the European Medicines Agency (EMA) for ... -
Gene-editing Therapy CTX001 Granted Priority Medicines Designation for Severe SCD in EU
CTX001, an investigational gene-editing cell therapy, has been granted priority medicines (PRIME) designation by the ... -
I Started Going Outdoors More, but Soon Changed My Mind
After many months of sheltering in place, or shielding, as we call it here in ... -
Graphite Bio Raises $45M to Move New Way of Gene Editing Into Sickle Cell Trial
Graphite Bio, a startup biotech company, has raised $45 million in an initial financing round ... -
Trying a Different Medication to Address Iron Overload
Iron overload is a common side effect for sickle cell patients participating in blood transfusion ... -
GreenLight Wins $3.3M Grant to Pursue mRNA-based Gene Therapies
The Bill & Melinda Gates Foundation has awarded a $3.3 million grant to GreenLight Biosciences ... -
Thinking Ahead by Cultivating Healthy Habits Now
Having a lifelong condition like sickle cell disease forces people to grow up pretty quickly. ... -
Study Identifies FDA-approved Medications With Potential for Treating SCD
Using a newly developed assay, researchers identified seven U.S. Food and Drug Administration (FDA)-approved medications ... -
Activities Underway for Newborn Screening Awareness Month
As it does each September during Newborn Screening Awareness Month, Baby’s First Test is sharing information ... -
Genetic Differences Seen to Mirror Sickle Cell Severity in African Study
Genetic analyses of African patients identified several genes and biological pathways that are associated with ... -
My 2 Hopes for Sickle Cell Awareness Month
Just like that, it’s September again – aka Sickle Cell Awareness Month. Sickle cell awareness ... -
‘Brain-Gut Axis’ May Be What Links Stress and Crises in SCD Patients
Microbes in the gut play a key role in inducing vaso-occlusive crises (VOCs) in response ... -
My Birthday Wish for Sickle Cell Patients
I turned 31 on Aug. 20, 2020. That’s 31 years as a sickle cell patient, ... -
Grant Expands SCD Patient Registry of COVID-19 Infections to Include Africa
The SECURE-SCD registry, which is collecting de-identified data on individuals with sickle cell disease (SCD) ... -
What Chadwick Boseman Taught Me About Perseverance
Death always is a sobering thing to process. Hearing about someone’s untimely passing — whether ... -
Same But Different Photo Contest Celebrates People With Rare Diseases
Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is ... -
Sickle Cell Awareness Month Events Underway Across US
September is National Sickle Cell Awareness Month, set aside annually to bring attention to the ... -
European Commission Grants Orphan Drug Status to Imara’s IMR-687 for Sickle Cell Disease
The European Commission has granted orphan drug designation to IMR-687, Imara’s potential new therapy for ... -
Breaking the Habit of Assuming the Worst in Others
Looking at my diagnosis in a positive light doesn’t come naturally to me. I usually ... -
EDIT-301, Experimental Cell Therapy for SCD, Earns Rare Pediatric Disease Designation
The U.S. Food and Drug Administration (FDA) has given rare pediatric disease designation to EDIT-301, ... -
Medical Marijuana Reduces Pain and Hospital Visits in SCD Patients
Use of medical marijuana to ease pain is associated with fewer visits to the hospital ... -
Sickle Cell Patients Should Have Medical Exemption in the UK
In the U.K., the National Health Service maintains a medical exemption list with conditions that ... -
First Sickle Cell Patient Dosed in Phase 2b Trial of Imara’s IMR-687
A Phase 2b clinical trial that is investigating the safety and effectiveness of IMR-687 in ... -
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to ... -
Rolling With the Punches
Life can change so unexpectedly, especially when dealing with the unpredictability of sickle cell. Sometimes ... -
Sickle Cell Oral Treatment Xromi Approved in Scotland for Ages 2–9
The Scottish Medicines Consortium (SMC) has approved the use of Xromi (hydroxycarbamide), a liquid form ... -
Parallel, Pitt Team Up to Study Medical Marijuana for Treating SCD Symptoms
The cannabis company Parallel, which aims to improve quality of life with its products, has launched ... -
What Not to Say to Someone With Sickle Cell
Have you ever informed somebody of your diagnosis and found their response to be a ... -
Nearly $1M Grant to Support Work Into Reactivating Fetal Hemoglobin
The National Heart, Lung, and Blood Institute (NHLBI) awarded nearly $1 million to Athena Starlard-Davenport, ... -
So, What Is Sickle Cell Disease Again?
In the U.K., approximately 15,000 people have sickle cell disorder and approximately 240,000 have the ... -
‘Be The Match’ Urges Blacks to Join Donor Registry for Sickle Cell Patients
With a stem cell transplant (SCT) being a potentially curative treatment for sickle cell disease (SCD), a ... -
Distress Evident in Parents Caring for Teens with Sickle Cell, Survey Finds
Emotional distress affected nearly half of the parents caring for adolescents with sickle cell disease in ... -
How Lockdown Has Affected My Weight
During this period I have heard a lot of people complain about unwanted weight gain, ... -
CHMP Gives Positive Opinion to Adakveo for Treating Vaso-occlusive Crises in SCD Patients
A European Medicines Agency (EMA) committee has adopted a positive opinion on Novartis‘s Adakveo (crizanlizumab) for ... -
Emergency Care Often Not Ideal for Sickle Cell Patients in US, Survey Finds
Most people with sickle cell disease (SCD) in the U.S. are satisfied with their primary ... -
A Message to Parents Expecting a Child With Sickle Cell
I recently spoke to a mother who gave birth to a child with sickle cell. ... -
Cannabis Seen to Help Ease Pain in Sickle Cell Patients in Small Study
Cannabis could be a safe and potentially effective way of easing chronic pain in people ... -
Staying at Home Has Helped Me Follow a Healthier Routine
Living in lockdown the past few months has been quite an experience. If you had ... -
Umbilical Cord Blood Transplant Treats Children With Genetic Disorders, Trial Finds
An umbilical cord blood transplant, coupled with a reduced intensity conditioning (RIC) regimen, can safely and effectively ... -
Avoid Using the Internet to Self-diagnose
The internet has been a blessing in many of our lives. It is an extremely ... -
Stem Cell Transplant from Unrelated Donors Holds Promise for SCD Patients, Study Suggests
Blood stem cell transplant from unrelated donors is a feasible strategy in people with sickle ... -
Bronchodilators to Treat Asthma May Worsen Youngsters’ SCD, Study Suggests
Bronchodilators used to treat asthma could worsen sickle cell disease (SCD) in children and teens, ... -
Heat Waves Can Exacerbate My Sickle Cell Symptoms
We recently experienced a heat wave here in the U.K., where temperatures climbed as high ... -
Potential Oral DMT Showing Safety and Signs of Efficacy in Phase 1 Trial
FT-4202 — an investigational treatment for sickle cell disease (SCD) — has a favorable safety profile ... -
7th Annual Walk With the Stars & Move-A-Thon Kicks Off July 11 to Fight SCD
While it will be entirely virtual this year, the 7th Annual Walk With the Stars ... -
Finding My ‘New Normal’ as Lockdown Restrictions Ease
It has started … the period I have been uncertain about. Restrictions are starting to ... -
GBT to Request Oxbryta’s Approval in Europe for SCD Patients 12 and Older
Global Blood Therapeutics (GBT) plans to submit a marketing authorization application to the European Medicines ... -
Mitapivat Safely Increases Hemoglobin Levels in SCD Patients, Phase 1 Trial Shows
Mitapivat (AG-348) safely increased the amount of hemoglobin and changed the levels of biomarkers of ... -
On World Blood Donor Day, I Thanked Blood Donors Everywhere
We celebrated World Blood Donor Day on June 14. It reminded me that blood donors ... -
First SCD Patient Treated With CTX001 Remains VOCs-free After 9 Months
The first patient with severe sickle cell disease (SCD) who received a single infusion of ... -
Here Are Ways to Help Friends with Sickle Cell Disease
Whenever I meet new people and tell them I have sickle cell disease (and explain ... -
World Sickle Cell Day Celebrates Patients, Raises Awareness
Supporters are poised to mark World Sickle Cell Day, observed each June 19 to raise ... -
Let’s Celebrate World Sickle Cell Day by Focusing on Our Achievements
June 19 is World Sickle Cell Day, and I have been reflecting a lot on ... -
Bluebird Bio Presents Data from LentiGlobin Gene Therapy Trial
Bluebird Bio’s investigational gene therapy LentiGlobin safely prevents serious vaso-occlusive crises and acute chest syndrome in ... -
Listening to Sickle Cell Patients Is Crucial During a Crisis
I recently was admitted to the hospital during a sickle cell crisis and because of ... -
GBT to Request That Oxbryta Treat Children Starting at Age 4
Global Blood Therapeutics (GBT) will ask the U.S. Food and Drug Administration (FDA) to allow children with sickle ... -
Sickle Cell Takes a Toll on My Veins
Small veins and sickle cell are never a good mix. As luck would have it, ... -
Sickle Cell Society Survey Looks to Better Understand Pandemic’s Affect
The Sickle Cell Society of the U.K. has created a survey to gather feedback from people with sickle ... -
Don’t Take Good Health for Granted
Dealing with sickle cell disease is a constant battle. In every moment, I either am ... -
IMR-687 Safely Increases Fetal Hemoglobin Levels in SCD Patients, Phase 2a Trial Shows
IMR-687 safely increases the levels of fetal hemoglobin and the number of fetal hemoglobin-producing cells ... -
COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say
While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for ... -
Smartphone App May Help Assess Anemia Using Eyelid Pictures
A smartphone app that measures hemoglobin levels using pictures of a person’s inner eyelid may ... -
Vitamin D Supplements May Reduce Pain-related Emergency Room Visits in Children with SCD
Taking vitamin D supplements may lower the number of visits to the emergency department due to vaso-occlusive ... -
What’s Inside My Medicine Cabinet?
Living with sickle cell disease, I rely on several medications and treatments for various situations. ... -
Partnership to Ensure Supply of LentiGlobin, Potential Gene Therapy
Bluebird Bio extended a partnership with two divisions of Hitachi Chemical for the long-term development and manufacturing ... -
How My Parents Set Me Up for Success in Sickle Cell Management
My parents knew they were carriers of the sickle cell trait before I was born, ... -
Sickle Cell Disease Association, Hemanext Join to Support Programs
Hemanext, a medical technology company, is working with the Sickle Cell Disease Association of America (SCDAA) to ... -
Agios to Decide Next Steps for Mitapivat as SCD Treatment by Mid-year
Agios Pharmaceuticals announced that, despite the current COVID-19 outbreak, it remains on track to decide by mid-year next ... -
What Does a Sickle Cell Crisis Feel Like?
One of the most widely discussed symptoms of sickle cell anemia is a sickle cell ... -
Gene-editing Therapy CTX001 Granted RMAT Status by FDA for Severe SCD
The U.S. Food and Drug Administration (FDA) has granted regenerative medicine advanced therapy (RMAT) designation to ... -
Sickle Cell Association Issues COVID-19 Guidelines for US Reopening
An advisory committee of the Sickle Cell Disease Association of America is recommending that people with sickle ... -
How I Prepared for the Intense ‘1,000 Reps Challenge’
My activity levels have steeply dipped because I’ve been restricted to my house. I’m unable ... -
Rice University Gets $2.45M NIH Grant to Improve CRISPR/Cas9 Treatment for SCD
The U.S. National Institutes of Health (NIH) has awarded researchers at Rice University a four-year, ... -
APCER Report Confirms Safety of Sickle Cell Therapy Endari
APCER Life Sciences has released a report confirming the safety profile of Endari (L-glutamine), according ... -
‘What’s Wrong with You Now?’
“What’s wrong with you now?” I am all too familiar with that phrase. From a ... -
Fera Requests FDA Orphan Drug Designation for Naproxcinod for SCD
Fera Pharmaceuticals submitted an application to the U.S. Food and Drug Administration (FDA) requesting orphan ... -
Case Researchers Awarded $3.7 Million to Test Emerging SCD Gene Therapies
A team at the Case Western Reserve University has been awarded up to $3.7 million ... -
Keeping Safe During a Lockdown
In the early days of this outbreak, only a couple of media outlets nonchalantly reported ... -
Sickle Cell, Darwinism, and COVID-19: Is My Life Worth Less Than Yours?
“Survival of the fittest” is a phrase I have come to loathe. This manner of ... -
FDA Grants Orphan Drug Designation to FT-4202 for Sickle Cell Treatment
The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to Forma Therapeutics‘ FT-4202 ... -
HealthWell Foundation Offering Help with Sickle Cell Treatment Costs
The nonprofit HealthWell Foundation launched a new fund to help people with sickle cell disease afford ... -
The Importance of Practicing Gratitude
The intentional practice of gratitude is an essential life skill that’s helped me endure the ... -
Phase 2 Trial of Olinciguat, Oral Sickle Cell Therapy, Completely Enrolled
The Phase 2 STRONG-SCD trial evaluating olinciguat as a potential oral therapy for sickle cell ... -
Sickle Cell Disease Association of America Extends COVID-19 Emergency Fundraiser
The Sickle Cell Disease Association of America (SCDAA) has announced the extension of its ongoing ... -
Self-isolation Prompts a Range of Emotions Requiring Adjustments
I have been self-isolating since March 19, and already I have been through a series ... -
GBT Donating $250,000 to Nonprofits Aiding Sickle Cell Community
Global Blood Therapeutics (GBT) is giving $250,000 to support the U.S. sickle cell disease (SCD) community ... -
During Lockdown, It’s OK to Rest, Too
I was hospitalized on March 3 with a sickle cell crisis and discharged 12 days ... -
Phase 1/2 Trial of Gene-editing Therapy for SCD Cleared by FDA
The U.S. Food and Drug Administration (FDA) has cleared the start of a Phase 1/2 ... -
We Need Credible Information During the Pandemic, Not Dangerous Myths
As a sickle cell advocate, many people have come to me for advice, especially in ... -
The Isolation Diaries
On March 16, 2020, United Kingdom Prime Minister Boris Johnson announced that in response to ... -
Inflammation Markers Identify Sickle Cell Patients at Risk for Worse Outcomes, Study Suggests
High blood levels of two pro-inflammatory molecules, called interleukin-6 (IL-6) and interleukin-8 (IL-8), are linked ... -
Availability of Endari Not Affected by COVID-19 Pandemic, Emmaus Says
The supply of the sickle cell disease (SCD) medication Endari (L-glutamine) will not be affected ... -
Here’s My List of Things to Do While Social Distancing
The spread of the coronavirus means that those of us with sickle cell disease need ... -
GBT Supports Sickle Cell Patients During COVID-19 Pandemic
Global Blood Therapeutics (GBT) is taking proactive measures to support public health efforts and sickle ...