#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
#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
#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! CDG & Allies - PPAIN results were presented and discussed.
Patient-centricity and involvement in health and research were the motto of the event.
Thank you to all of the participants and speakers! It was a great event!
Know more 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.
Learn more about this project HERE
#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!
#WorldCDGConference: Last days for registration at the 3rd WORLD CONFERENCE CDG!
Deadline 1st June 2017.
This conference is dedicated to all CDG experts: Families, Physicians, Researchers and other professionals. A wide range of topics will be discussed.
Will you join to CDG community in Leuven? See more HERE .
To mark May 16 as World Congenital Disorders of Glycosylation (CDG) Day, the international research network CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies- PPAIN) launches a new communications platform to recruit patients and families for various research projects, for divulging their results, as well as to highlight the information on the innovative research approaches developed by this international team!
For more information read the press release below (in ENG and PT):