#RareDiseasesNews: What's a natural history study? Why does it matter? In this video you will find a very clear and short explanation! We need to have it done for #CDG! It would make a world of difference!
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#RareDiseasesNews: Easier, cheaper, faster access to #OrphanDrugs is needed!
The Aussies are giving the world a wonderful example #MorquioSyndrome #LifeSavingDrugsProgram Read the full article HERE #RareDiseasesNews: What is research? How can it help us? How is it done? #PatientCentricity - the new research model!It's all about YOU! #RareDiseasesNews: Big data - where are we going to store it all? Europe advances a solution! The biggest shared data repository for researchers. How can it impact #RareDiseaseResearch?
Share the news and your thoughts! Know more HERE #RareDiseasesNews: Can India revolutionize #PrecisionMedicine? Well, having 1.3 billion human genomes, gives them an incredible head start 🤔 What do you think?
Visit HERE to know more. #RareDiseasesNews:Celebrating a victory for #EpidermolysisBullosa patients & for #RareDiseases' treatments! #StemCellTherapy
Know more HERE #RareDiseasesNews:Patient involvement in medicines R&D:
- Complex? Yes! - Needed? Oh, Yes! But, how & when? Some initiatives are trying to answer these questions! #EUPATI #PFMD Read the full article HERE #RareDiseasesNews:Have you ever heard about the Orphanet portal? It contains loads of information about #RareDiseases. Learn how to access and navigate it in 3 minutes. Please share and like if you found it helpful! #EURORDISSummerSchool is a training initiative for Patients and Researchers developed by EURORDIS. This prestigious event (5 day face-to-face training sessions) is preceded by 5 months of online training on medicine development, regulation and marketing.
This year one of the Alumni was the CDG Researcher and Patient Advocate Rita Francisco. It is very important to have informed and empowered members of the CDG Commnity, who can have impact on the national, european and international levels! Learn more EURORDIS Summer School HERE #CDGResearch We have just climbed a step further into knowledge.
Our recent research project “Cardiac complications of CDG. A systematic review of literature” was accepted for scientific publication! This work was conducted by the CDG international research network CDG & Allies - PPAIN. Continue following our work! |
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June 2018
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