World CDG Community
“Nothing about us, without us”- James Charlton
Patient, family members and patient advocacy groups refused to be passive victims by welcoming and supporting any initiative to the rare disease landscape that are seriously committed to developing safe, effective treatments for patients. Due to the specificities of rare diseases, patients and family members are amongst the most active drivers to foster awareness, education and research.
This section aims at liaising all stakeholders and at being a vehicle to promote collaborative work. A complete directory of CDG patient advocacy groups as well as local patient representatives is offered.
This section aims at liaising all stakeholders and at being a vehicle to promote collaborative work. A complete directory of CDG patient advocacy groups as well as local patient representatives is offered.
VERY IMPORTANT, PLEASE READ IF YOU USE OUR CDG AWARENESS TOOLKIT:
The resources can not be used for commercial or fundraising purposes. For further questions or suggestions please contact: sindromecdg@gmail.com
Our work is publicly available to help the CDG community and related rare disease communities. Importantly, our resources are done by volunteers. We do not receive government funding. We rely solely on donations in order to continue our projects. Consider to make a donation using Paypal, debit or credit card or bank transfer. Your donation will help fund advocacy efforts, awareness, education and research. All details are found at http://www.apcdg.com/get-involved1.html
THANKS!
The resources can not be used for commercial or fundraising purposes. For further questions or suggestions please contact: sindromecdg@gmail.com
Our work is publicly available to help the CDG community and related rare disease communities. Importantly, our resources are done by volunteers. We do not receive government funding. We rely solely on donations in order to continue our projects. Consider to make a donation using Paypal, debit or credit card or bank transfer. Your donation will help fund advocacy efforts, awareness, education and research. All details are found at http://www.apcdg.com/get-involved1.html
THANKS!
How to connect with the World CDG community?
CDG Global Alliance
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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
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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. |
More information on RareConnect:
- Visit the RareConnect website for a full list of the current rare disease communities.
- Visit the RareConnect Facebook page
- Patients or patient organisations interested in partnering with EURORDIS or NORD to develop an online community for their rare disease, can contact: marta.campabadal@eurordis.org
Rare Commons
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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 . |
How families and medical doctors can drive CDG research on Rare Commons?
Rare Commons platform for CDG is available in Spanish and English. All families and their medical doctors are invited to sign up
from today !
Afterwards, the dynamics of collaboration in Rare Commons is simple, confidential and secure:
Adapted from source: https://www.rarecommons.org/en/how-we-work
Website: https://www.rarecommons.org/en
Facebook: https://www.facebook.com/RareCommonsHSJD
Rare Commons platform for CDG is available in Spanish and English. All families and their medical doctors are invited to sign up
from today !
Afterwards, the dynamics of collaboration in Rare Commons is simple, confidential and secure:
- Read a chapter about an organ or bodily system affected by the disease.
- Fill out a medical questionnaire on the subject.
- While filling in the questionnaire, you will have access to support and advice, both from the main investigators and from other families already involved in the project.
- Once the questionnaire is completed you will have access to the entire body of information provided by the community as a whole in the form of graphs and tables annotated by the team of scientific experts in each area of specialization related to the disease.
- Then the data is treated in a confidential and collectivelly manner and presented in graphs and tables, you can consult this global data whenever you want once the linked questionnaire is completed
- During this process, you can invite your doctors to take part in the CDG clinicians community which aims at adding to the project their knowledge and collaboration regarding their experience with CDG patients.
Adapted from source: https://www.rarecommons.org/en/how-we-work
Website: https://www.rarecommons.org/en
Facebook: https://www.facebook.com/RareCommonsHSJD
World Conference on Congenital Disorders of Glycosylation (CDG)
The "World Conference on Congenital Disorders of Glycosylation for Families and Professionals” is a biennial event fruitfully designed in collaboration with leading experts in the field of CDG: families and professionals work together to exchange knowledge, experiences, needs and perspectives.
How you can get involved in the "World Conference on Congenital Disorders of Glycosylation for Families and Professionals" activities?
STEPS:
Follow the updated information on http://www.apcdg.com/education.html
- Join us on Facebook and be updated on the "4th World Conference on CDG:" which will be held in Lisbon, Portugal - 26 to 28 July 2019.
- When the event is close, use the World Conference Symbol on your Facebook profile picture & Twitter page !
- Change your Facebook cover to the World Conference on CDG Facebook cover (see toolkit below)
- Disseminate the infographic dedicated to explain the important benefits of this gathering event (see toolkit below).
- Be a volunteer! We need volunteers to assist in several activities. For detailed information please visit http://www.apcdg.com/get-involved1.html
Follow the updated information on http://www.apcdg.com/education.html
"4th World Conference on CDG"
Lisbon, Portugal - 26 to 28 July 2019.
Please follow the updates on this unique event in our section specifically prepared for this purpose at
http://www.apcdg.com/events.html
http://www.apcdg.com/events.html
World Conference on CDG a Portuguese Association for CDG (APCDG) initiative in full collaboration with CDG patient groups and representatives and the medical and scientific committee
Newsletter
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