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The Latest Breaking News from Sickle Cell Disease

Somatic genome editing therapies are becoming a reality – but debate over ethics, equitable access and governance continue

Hundreds of experts from around the world gathered at the Francis Crick Institute in London this week for the Third International Summit on Human Genome Editing.

The Conversation

Sickle cell patients receiving poor care at NHS hospitals, damning report claims

Brits suffering from sickle cell are suffering such sub-standard treatment in NHS hospitals that they are resisting going in for help despite suffering debilitating pain, a report has claimed

Daily Mirror

Sadiq Khan urges BAME Londoners to donate blood

London mayor Sadiq Khan has urged black, Asian and minority ethnic (BAME) people to donate blood, to boost supplies for lifesaving treatments.Mr Khan gave blood himself at City Hall on Tuesday morning in a bid to set to an example for BAME people, who come forward to donate in disproportionately…

Evening Standard

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Sickle cell disease patients in England feel neglected, report says

NHS accused of providing ‘substandard’ care after study says people have poor hospital experiences that can cause harm

The Guardian - UK

Sickle cell cure will be cost-effective if health disparities considered -study finds

(This Dec.13 story has been corrected to remove reference to Sanofi in the fifth paragraph)

Reuters

For patients with sickle cell disease, fertility care is about reproductive justice

Teonna Woolford has always wanted six kids. Why six?

Tribune News Service

Woman called 999 while in hospital because she thought she 'was going to die'

Ara Emile has claimed that she is "lucky to still be alive" after her two-week-long stay at Princess Alexandra Hospital in Essex where she was receiving treatment for Sickle Cell disease

Daily Mirror

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They endured chronic pain and constant blood transfusions. Now a breakthrough drug has given them a new lease of life

Sickle cell disease sufferers face a lifetime filled with episodes of excruciating pain. But they tell Nadine White and Thomas Kingsley a new treatment has given them fresh hope

The Independent UK

'I feel cursed by sickle cell disease - my life depends on others coming forward'

Siliana Coelho, who says the pain she can experience is like being repeatedly hit by a hammer, calls for black blood donors to help save her life as NHS Blood and Transplant estimate that 40,000 new black-heritage donors are needed

Daily Mirror

Woman fighting sickle cell disease says blood donors keep her alive

Social worker Stephanie Danso wants to raise awareness about sickle cell anaemia, a disease that occurs predominantly in people of African and African-Caribbean origin

Daily Mirror

What is sickle cell disease? Symptoms and treatments

Everything you need to know about sickle cell disease

Evening Standard

NHS calls for more black blood donors to help treat sickle cell disease

Demand for blood donations to treat the disease has risen by 67 per cent over the past five years

Evening Standard

What is sickle cell disease? Common symptoms and can it be treated?

Sickle cell disease is a serious and lifelong health condition. Here's everything you need to know about symptoms, causes and what treatment is available for it

Daily Mirror

Sickle cell disease: black donors urged to give blood as demand from patients soars

NHS says sickle cell is ‘fastest growing genetic condition in UK’ and demand for blood has jumped 67% in five years

The Guardian - UK

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The Independent UK

Record number of Black blood donors needed to treat sickle cell disease, NHS says

‘More demand for care than ever before,’ health chiefs say

The Independent UK

NHS makes ‘urgent’ call for black blood donors

More donors are needed to treat patients with sickle cell disease.

The Independent UK

Sickle cell: NHS to investigate racial inequalities for first time

Exclusive: Health chiefs hope findings will help to eradicate ‘often unacceptable, substandard’ care

Chicago Sun-Times

Too few kids with sickle cell disease get stroke screening, treatment, CDC finds

Fewer than half of children in the United States with sickle cell disease get a needed screening for stroke, and only about half or fewer get a treatment that can help with pain and anemia.

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The Independent UK

Study: Too few kids with sickle cell get stroke screen, care

A study of U.S. children with sickle cell disease found fewer than half get a needed screening for stroke, a common complication

Chicago Sun-Times

Sickle cell disease — how one Black family is coping with the illness and inspiring others along the way

September is National Sickle Cell Awareness Month. The blood disorder occurs among about one of every 365 Black births and one of every 16,300 Latino births, according to the U.S. Centers for Disease Control and Prevention.

Daily Mirror

What is sickle cell disease? Early symptoms from shortness of breath to tiredness

Sickle cell disease affects approximately 15,000 people in the UK. But what is it and what are the early signs to spot in children?

The Guardian - UK

Silence, stigma and unaffordable drugs: the Kenyan woman finding sickle cell solutions

As a child, Lea Kilenga was ostracised because of her sickle cell disease. Now she is a champion for others

The Guardian - UK

Sickle cell disease: nearly 50% of patients receive poor care, says global study

Across 10 countries almost half those surveyed say they were treated like drug addicts and more than third believe their race influenced poor care

Benzinga

Recap Of Thursday's Biotech Catalysts - End Of the Day Summary

The U.S. Food and Drug Administration (FDA) has accepted the Menarini Group and Radius Health’s (NASDAQ:RDUS), New Drug Application (NDA) for elacestrant for patients with ER+/HER2- advanced or metastatic breast cancer. The agency has granted Priority Review designation and assigned a target action date of February 17, 2023. Radius Health…

Benzinga

Recap Of Tuesday's Biotech Catalysts - End of The Day Summary

European Commission (EC) has approved AbbVie’s (NYSE:ABBV) lead asset RINVOQ (upadacitinib 45 mg [induction dose] and 15 mg and 30 mg [maintenance doses]) for the treatment of adult patients with moderately to severely active ulcerative colitis. AbbVie shares traded in a range of $150.33 to $153.56 on a day volume…

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