Twitter | Search | |
Search Refresh
Rare Diseases Europe Oct 26
Are you a researcher or a patient advocating for the development of medicines for ? Gain the knowledge and skills you need at the 👉Apply before November 15:
Reply Retweet Like
Foresight in Rare Disease Policy 21h
Europe's dedicated experts on and ERNs gathered yesterday to design the optimal policies for the next decade. Yesterday's event is the synthesis of 4 parallel sessions and will be the basis for the final recommendations
Reply Retweet Like
AllStripes (formerly RDMD) Oct 26
We are excited to announce our partnership with the Orphan Disease Center and to advance clinical understanding of . Read more through this press release:
Reply Retweet Like
Deusto Neuro-e-Motion Oct 22
Happy to share our first paper in in Congrats to all authors!👩‍💻 👉
Reply Retweet Like
NBIA Disorders Association Oct 25
Reply Retweet Like
Éric Samarut Oct 23
You said fresh fish? These surely are! freshly laid and freshly injected! Hopefully they can bring answers for Emma and Abby !
Reply Retweet Like
o2h Group Oct 26
We had an interesting and illuminating last week on ‘Fighting Rare Diseases - The science, economics and the patients.’ Recording available here -
Reply Retweet Like
Beyond the Diagnosis Oct 25
October 25 - 31 is National Epidermolysis Bullosa Awareness Week. Meet Clara. "Clara smiles when most of us would want to cry, she pushes forward when many of us would want to quit." Artist: Brandi Twillley
Reply Retweet Like
Beyond the Diagnosis Oct 23
October 23rd is Kabuki Syndrome Awarenss Day. Meet Rikki. Like most children with Kabuki, Rikki has a happy disposition. She is friendly, only temporarily reserved with strangers; but once you're friends, you're forever friends. Artist: Thea McElvy
Reply Retweet Like
Danny Daly-Arnett Oct 23
Today is - many people will not know what a PTEN mutation is as it is a rare genetic condition. My son Leo has this condition as well as autism. Hospital appointments and checkups are the norm for him. He is an amazing boy
Reply Retweet Like
TIF Oct 24
Screenshots from the presentation of 's Executive Director , at the NORBS Regional Conference for that took place online yesterday, 23 October.
Reply Retweet Like
Timber Pharmaceuticals 17h
Jessica Raiz, our senior director of clinical development, has more than 18 years of experience in clinical operations & clinical development. Her expertise strengthens our clinical programs & helps us carry out our mission to support people living with .
Reply Retweet Like
Zikani Therapeutics Oct 21
What is the promising science behind Ribosome Modulating Agents (RMAs)? Learn about our unique approach to fighting .
Reply Retweet Like
RareMed Oct 26
Our blog is full of information about our accomplishments, important updates, & the awards we’ve received at RareMed. Check out our page to stay up to date with our latest posts:
Reply Retweet Like
PacBio Oct 25
Molecular yields by symptom-driven clinical exome sequencing in patients w/ are only 25-35%. Tune in to the tomorrow to hear Emily Farrow explain how Sequencing & could help.
Reply Retweet Like
PPTAEurope Oct 21
Patient access to is critically important! Limiting patient choice to means often limiting access to the only effective therapy available for people living with chronic and
Reply Retweet Like
Jana Monaco Oct 26
Happy 23rd Birthday to my Stephen who has & continues to inspire many & improve life for those with &
Reply Retweet Like
Rare Diseases India Oct 26
One-time budgetary provision under Rashtriya Aarogya Nidhi for like disease is inadequate and too little. Requesting to prioritise treatment for in , provide funding support for disorders.
Reply Retweet Like
RDI Oct 23
Sign up 📅 is virtual and free on 28 Nov. Organised by , the online event aims to educate, empower and engage the community. 👉Register here:
Reply Retweet Like
22Q11 Ireland Oct 26
Individually rare collectively common (6000 + and counting) (EB) 
Reply Retweet Like