SCD News Hub
SC Sickle Cell Disease Registry now live online through DHEC
The voluntary registry will connect South Carolina sickle cell disease patients, caregivers, doctors and providers in a database to coordinate care and information.
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Read more'Made in India' Drugs For 4 Rare Diseases Reduce Treatment Cost By Nearly 100 Folds
Now, drugs for four of these diseases -Tyrosinemia Type 1, Gaucher's Disease, Wilson's Disease and Dravet-Lennox Gastaut Syndrome – along with sickle cell Anemia have been approved and are being manufactured indigenously
Read moreMajor drop in cost of drugs for 4 rare diseases after Indian companies begin production
In addition to rare diseases, the government has also urged the industry to produce an oral solution for hydroxyurea needed for the treatment of children up to the age of 5 years suffering from sickle cell disease.
Read moreSickle Cell Disease patients and the use of disease-modifying treatments
New disease-modifying treatments (DMTs), namely, crizanlizumab, L-glutamine, and voxelotor, have recently been approved.
Read moreUK Gives Historic Nod to Gene Editing Tool for Blood Disorders, High Costs & Long Wait May Limit Indians' Access
Data suggests that India has over two crore or 20 million patients with Sickle Cell Disease and the largest number of children with Thalassemia major in the world --- about 1.5 lakh with more than four crore or 40 million carriers of beta thalassemia trait
Read moreUK first to approve Casgevy gene therapy for blood disorders
Casgevy is a gene-editing tool devised using CRISPR-Cas9 to treat two severe blood conditions – sickle-cell disease and β-thalassaemia.
Read moreBritain approves world's first gene therapy Casgevy for sickle cell disease and thalassemia
The UK drug regulator says it approved Casgevy for patients with sickle cell disease and thalassemia who are 12 years old and over
Read moreWorld’s first gene-editing therapy for humans approved in UK
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Treatment offers relief and possibly a cure for patients with sickle cell disease and one other blood ailment
Read more"World First As UK Greenlights Landmark CRISPR Gene Editing Treatment"
The therapy will target the blood conditions sickle-cell disease and beta-thalassemia.
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