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…

Social entrepreneur on a mission to bridge the clinical research divide between the USA and India with advocacy and technology

Dr.Harsha Rajasimha is a rare disease social entrepreneur globally recognized for his work in genomics data science, persistent advocacy, and technology innovations addressing grand challenges facing the estimated 350 Million people suffering from rare diseases world-wide. Harsha earned his bachelor’s degree in computer science and engineering from Bangalore University, a Read more…

Sukanya

My name is Graves’ Disease…

Sukanya who faces  Rare Conditions called Graves’ Disease and Euthyroid Eye Disease (TED) sends in a poem which describes her health issues Sukanya’s article was earlier featured on Possiabilities This is poem about my disease…..Sukanya Das Hi. My name is Graves’Disease… JUST REMEMBER NOT EVERYONE GETS EVERY SYMPTOM!!!!!! I’m an invisible autoimmunedisease Read more…

A Message To TikTok Parents Who Use My Face To Make Their Kids Cry

Article – source and credit – https://www.refinery29.com/en-us/2020/08/9987054/new-teacher-challenge MELISSA BLAKE LAST UPDATED  AUGUST 26, 2020, 8:32 PM .“Oh, look,” I deadpan as I read the latest message from someone letting me know that they saw my photo on TikTok being shared in a hurtful way. “Surprise, surprise!”I joke because I’m definitely not Read more…

Sukanya

HOPE CUTS THE ROPE

Sukanya who faces Rare Conditions called Graves’ Disease and Euthyroid Eye Disease (TED) writes about her life’s journey. In life we don’t get enough scope for an honest confession, especially when it is relating to some sensitive topics like our disabilities, but fortunately and thankfully I got.  I just want Read more…