Swathi, the Pompe Warrior

On 15th April 2021, the Annual International Pompe Day , Siva SK from Malaysia shares an awareness video about his daughter. This year’s theme is “Pompe Around the World,” the International Pompe Association (IPA) announced. The event’s slogan is “Together We Are Strong.” ITS NOT HOW YOU FALL, IT’S HOW Read more…

C.L.A.W briefs National media on Operation Blue Freedom at New Delhi: Set to create the Land World Record at Siachen Glacier, as part of the historic Triple Elemental World Record series, launches nationwide Participant Campaign

A Team of Eight Persons with disabilities will scale Siachen Glacier, the highest battlefield in the World, said Major Vivek Jacob. The Indian Army has accorded in-principal approval for the execution of ‘Land world record’ at Siachen Glacier. The land world record is for the largest team of people with Read more…

OpenTreatments Foundation Launches Software to Decentralize and Accelerate Drug Development for Rare Genetic Diseases

OpenTreatments Foundation will enable treatments for genetic diseases regardless of rarity or geography using an open source software platform; Sanath Kumar Ramesh built the project to address his son’s rare disease, now that work will be available to all. Sanath Kumar Ramesh – Founder & CEO of OpenTreatments Foundation Sanath Read more…

Avoid These 5 Real-World Data Pitfalls When Planning your Patient Registry, Natural History, or Other Clinical Study for a Rare Disease

Author: Harsha K Rajasimha, MS, Ph.D. Editor: Sharlene Brown, Ph.D. When clinical investigators and study coordinators start planning a new study design, speed and efficiency are paramount. Running a clinical study takes careful planning. Whether this is your 1st clinical study or your 21st, the last thing you probably want Read more…