@IRDiRC Announces The Creation of Regulatory Science Committee to Tackle Regulatory Challenges in Rare Disease Research
Read the press release here👉🏻 https://t.co/eHRJSm2KeH
#IRDiRC#RegulatoryChallenges
We are proud to announce that the commentary on 10 years of progress and challenges of IRDiRC is now fully available for reading!
Find more information here: https://t.co/tSvPbGRBhO
🌎International collaboration is essential to advance the #RareDisease research & improve the lives of the patients.
IRDiRC Companies Constituent Committee Vice Chair Christina Waters shares the impact of @irdirc in the #RareDiseaseCommunity.
Watch here: https://t.co/DNgYOwnmiO
🌍 What a delight to meet in sunny Paris with IRDiRC colleagues from all over the world on the occasion of the two-day Joint IRDiRC Consortium Assembly & Scientific Committees Meeting! #RareDiseases#MaladiesRares#Collaboration#IRDiRC
Are you raising awareness for Rare Disease Day this year?
Using #RareDiseaseDay helps members of the rare disease community find each other, build solidarity, and get involved in Rare Disease Day.
Find out how you can get involved: https://t.co/dOjYVhSUYX
“If we can identify more quickly what is going on with children, then we can treat them faster, or make a change, so we can understand what's similar and different across these different diseases.”
Listen to @RareWaters on The G Word #sciencepodcast.
https://t.co/sKQ6irTce1
And our Lifetime Achievement Award recipient in 2022 is... 🥁
Dr. William Gahl! 🏆 We wish to celebrate his lifelong dedication to addressing the needs of people living with a rare and undiagnosed disease.
👉 https://t.co/8SiIjavJgD
In the latest G word podcast, Christina Waters, SVP of Global Genomic Insights and Solutions at Congenica, asks why aren't there better disease therapies available? #lifechanginganswers#rarediseases#precisionmedicine https://t.co/VBlJd4QkB0
This week on The G Word #sciencepodcast, @vivienneparry is joined by @RareWaters, SVP of Genomic Insights and Solution at @Congenica.
She discusses patient involvement, genetic interpretation and the merits of industry.
https://t.co/Gmk4C9LXUN
In @CellGenomics, authors present the organization’s perspective on the concept of federation, defined as a consortium of independent organizations that each host their own data in a secure, standardized manner so that users can responsibly access data. https://t.co/ZKWJMJuPE9
Today marks 100 days to go until Rare Disease Day 2022 and the official launch of the #RareDiseaseDay global campaign.
Find out how you can already get involved on our brand new website: https://t.co/XG08Cu8gh5
In @CellGenomics, authors present the CanDIG platform, which enables federated querying & analysis of human genomics & linked biomedical data. CanDIG leverages the standards & frameworks of #GA4GH & currently hosts data for 5 pan-Canadian projects. https://t.co/fWELulwTF8
Mark your calendars, it’s officially 100 days until #RareDiseaseDay! Join NORD as we raise awareness for patients and families affected by #RareDiseases. Join us on Monday, February 28 and get ready to #ShowYourStripes.
Did you know that 70% of genetic rare diseases start in childhood?
As we celebrate #WorldChildrensDay, we recognize the many children around the world living with rare diseases.
If your child is one of them, share their story to raise awareness: https://t.co/jlrdT98jkG
Dr Charles Steward joins an esteemed panel of speakers today at online event Pharma Integrates to discuss how can we engage, educate and empower patients to enable medicines to reach them more quickly?https://t.co/5KOnxTr97h #lifechanginganswers#patientadvocacy
Today we open the 'black box' and follow a patient's journey as they are enrolled in the 100k Genomes Project, searching for answers to a young boy's significant healthcare challenges. https://t.co/3jZZsOv9iF #lifechanginganswers#blackbox#rarediseases