So far almost 800 CDG families and professionals are members of the CDG Global Alliance!
The goal of CDG Global Alliance Facebook page is to make the best use of social media tools to transform CDG families lives. A strong social media presence can be the key ingredient to overcome many of these barriers. CDG patient representatives are extremely motivated users of social media and empowered citizens and scientists. CDG Global Alliance boosts worldwide collaborative networks within families and professionals by fostering effective communication, sharing information and significant resources. Facebook page: https://www.facebook.com/groups/129138224432/ |
RareConnect.org, a EURORDIS initiative, is the growing online network of rare disease communities that brings together thousands of patients, families and groups who might otherwise be isolated. Through RareConnect, patients and those who care for them can communicate, sharing experiences and information in a safe, moderated online forum. With human translation available at no cost to participants, RareConnect allows patients from different countries to interact in English, French, German, Italian, Portuguese or Spanish languages. |
The Rare Commons platform allows access to a safe and secure environment under the supervision of the Sant Joan de Déu Hospital. The goal is to offer appropriate resources to encourage the development of biomedical knowledge, in cooperation with the family members of patients affected by rare diseases.
Rare Commons develops research on CDG through an online community dedicated to CDG. Users are grouped into private communities that bring together families and physicians (in separately communities and with appropriate services) who can work together to expand scientific knowledge about the illnesses in question and better record their natural course and evolution. The community is also designed to provide mutual support between families and physicians thorugh an online . |
Newsletter
|
|