#RareDiseasesNews:"Researchers competed with each other, because the ecosystem was designed to reward competition rather than to alleviate suffering" -
This is an urgent paradigm shift we need to bring about in #RareDiseaseResearch!
This is one of the main goals & achievements of CDG & Allies - PPAIN!
Know more about the international research network dedicated to CDG HERE
Did you know 110 families registered for the 3rd #WorldCDGConference? Are you among them? If so, like & share this post! 💚
Know more HERE
#RareDiseasesNews: Have you ever heard about #DrugRepurposing?
Did you know it could really be a very interesting solution for #OrphanDrugs - Faster, Cheaper & more affordable? #CDG
Discover more HERE
Check out the final version of the AGENDA for the 3rd #WorldCDGConference HERE.
Start preparing to network with families & professionals!
See you all soon!
Rita Francisco represented the #CDGCommunity at the 1st Summer Training Course for Young Patient Advocates, which took place in Vienna.
Leadership and overcoming discrimination were the main topics.
Intense & productive 3 days! #Advocacy
European Patients' Forum #YoungPatient17
#RareDiseasesNews: A study has shown that magnets may be an interesting solution to correct nystagmus - an eye condition that affects many #CDG patients, and which may be quite relevant for patients with thrombotic incidents!
Know more HERE
#RareDiseasesNews: What is #CDG? Prof Eva Morava explains essential concepts - A Must-watch and must share, so that everyone knows about CDG!
Let's raise #CDGAwareness!
#RareDiseasesNews:Did you know that a #ClinicalTrial to learn more aboutthe natural history of PMM2-CDG is starting to be planned?
Recruitment has not started, but more updates will become available in this website HERE .
#RareDiseasesNews: When you have a child with #SpecialNeeds and a typically evolving child, how do you expect them to get along?
What happens that you never thought could happen?
What changes and what stays the same?
Another great article from a #CDG Mom HERE
#RareDiseasesNews: What worries you the most about your #SpecialNeeds child growing up?
Here is the testimony of a Special Mom!
Share this post and share your thoughts!
Read the full article HERE
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