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#RareDiseasesNews: *** Important Webinar*** Emerging Biopharma & Rare Disease: Finding a Needle in a Haystack: Data-driven Patient Recruitment Solutions Date: Thursday, June 08, 2017 Time: 02:00 PM Eastern Daylight Time Duration: 1 hour Register HERE 
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#RareDiseasesNews: A tribute to ALL Rare Mothers, who just keep on fighting for their children... No matter what! 💪👏 #RareDiseasesNews:#GeneTherapy, Enzyme replacement have we reached the momentum for Rare Diseases Therapies? BUT, remember only 5% of all Rare Diseases have a treatment - So, what's next? Learn more HERE  #WorldCDGConference: Have you registered on the 3rd World Conference on CDG? Last days to respond to our invitation ! Deadline 1st June 2017! Register HERE  #RareDiseasesNews:#RareDiseases are becoming a priority worldwide #China. If the world unites progress will come faster and steadier. Know more about China's efforts in tackling rare diseases HERE  #RareDiseasesNews: This clinic is helping women with disabilities birthing their children safely! Impressive! Read the full text HERE  #RareDiseasesNews: India has set up a #RareDisease's registry - Registries will help understand the natural history of diseases, facilitate patients' recruitment for research and facilitate dialogue between patients, physicians and researchers http://bit.ly/2rJCYQX  #RareDiseasesNews: The World is committed to educating a raising awareness for #RareDisease & #PersonalizedMedicine: - NORD's FREE program: HERE - European Alliance for Personalised Medicine TEACH program: More information HERE Help raise awareness too- Share this with your physicians, nurses and therapists!  #WorldCDGDay celebrations remember: This is how Lisbon (Portugal) united in commemoration of May 16 - A free workshop was held to promote CDG Research & Awareness at NOVA University! Thank you to all of the participants and speakers! It was a great event! Know more HERE  May 16 is #WorldCDGDay and to celebrate it Dr Sunnie Wong will be defending her PhD thesis on "Identification of a novel pathomechanism underlying a congenital disorder of glycosylation: interplay between sugar metabolism, PI3K/AKT signaling, and protein glycosylation". This work was supervised by Prof Eva Morava! Sunnie's big event is already on our Worldmap HERE Best of Luck Sunnie and Thank you for your incredible work!  |
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