Data ownership as leverage in accelerating rare disease drug development? Finally, there’s a cloud software that empowers patient groups!

Patient groups can optimize patient registries, cross-sectional studies, and/or longitudinal natural history studies to maximize collaborations with sponsors of orphan drugs and gene therapies A disease is considered rare if it affects fewer than 200,000 people in the United States. There are over 8,000 named rare diseases and each year, 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…

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…