The Portuguese Association for CDG (APCDG) and CDG&Allies-Professionals and Patient Associations International Network (CDG&Allies-PPAIN) are preparing a co-joint Newsletter.
Keeping faithful to their Patient-centricity model, they launch a 2 min to survey (with ONLY 3 questions!), so that CDG patients, families and professionals can express their preferences.
Thank you for sharing your views and for allowing us to meet your needs!
Let your Voice be heard!
***The survey will be open until 1st August***
Don't miss this chance!
Access the questionnaire HERE
#RareDiseasesNews: Under the Maltese Presidency of the EU Council, countries devise a cooperation strategy to improve access to #OrphanDrugs
More information available HERE
#RareDiseasesNews: A wonderful article that discusses a very current & expanding topic - The impact of Giant Techs - Google, Facebook,Twitter or Wikipedia - in healthcare.
What's specific to Rare Diseases? #NGLY1#CDG
A must-read, fully accesible HERE
#RareDiseasesNews: How Rare are Rare Diseases?
Government health organizations, pharma companies and patient advocates are working to solve the frequency-bias #OrphanDrugs
Read more HERE
#RareDiseasesNews: How is Europe trying to improve access to #OrphanDrugs? Know more about the incentives and other measures being taken. Do you think they're enough?
Learn more HERE
#RareDiseasesNews: 123Genetix is a non-profit dedicated to creating its proprietary predictive computer models of rare disease biology to empower medical researchers.
And they are preparing to offer their software for FREE to other to not-for-profit researchers and organizations.
Find out more HERE
#RareDiseasesNews: Yet another 2 rare diseases find new hope with the help of #GeneTherapy #LentiGlobin
Access the fulçl article HERE
#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
#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
#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