John E. Milad

We were proud to host the parliamentary launch of our new report on rare kidney diseases at a roundtable in the House of Commons this week. A huge thank you to @StuartAndrew MP for hosting and to our incredible speakers: Health Minister @zubirahmed, Dame June Raine, George Agathangelou from @ZSAssociates, @louise_oni, and kidney patients Kathryn and 15-year-old Morven for sharing their powerful stories. It was inspiring to see so much commitment to improving outcomes for the 160,000 people in the UK living with a rare kidney disease. Together, we’ll keep building momentum to make the case for: • Earlier diagnosis • Better access to treatments • Inclusion of children in clinical trials #KidneyDisease

Our new report, looking into rare kidney diseases in the UK, has uncovered shocking statistics in diagnosis delays, inconsistent care, and long waits for new treatments, with the impact being more severe for children. Rare kidney diseases include over 150 distinct diseases that, while individually uncommon, are estimated to collectively affect around 160,000 people in the UK. Following our findings, we are calling on government to deliver faster diagnosis, ensure children can be included in clinical trials, and commit investment into research and services so families are no longer left behind. Sandra Currie OBE, chief executive of Kidney Research UK, said: “This report provides the first real insight into the significant impact of rare kidney diseases and, importantly, lays out a clear path for action. We need faster and more accurate diagnoses, smoother transitions between child and adult services, and better inclusion of children in clinical trials so they are no longer last in line for innovation.” Head to our report to see our 10 key findings and 14 recommendations: bit.ly/47Wdp5Z Do you live with or know someone living with a rare disease? We’d love to hear your experiences in the comments.

We’re excited to announce a #CRISPRCas9 license agreement with @UMontreal, a leading Canadian research institution renowned for scientific innovation & tech transfer. Access to CRISPR/Cas9 enables the launch of two screening facility platforms: shorturl.at/Ru39b

#CRISPR was used to modify the genes of Aspergillus oryzae (koji mold), creating a meat-like patty with boosted nutritional and sensory value by overexpressing genes for ergothioneine (an antioxidant) and heme (for color and flavor) More @TheScientistLLC: shorturl.at/X0tul

The annual #Fierce50 report is out—congratulations to @CRISPRTX for being named a 2024 honoree in the Breakthroughs category! This highlights the power of #CRISPRCas9, co-developed by Emmanuelle Charpentier, co-founder of CRISPR Therapeutics and ERS Genomics.

#CRISPRCas9 has been used to enhance hybrid production in rapeseed, a major oilseed crop used in vegetable oil production. Read more @Hortres: shorturl.at/CcymR