Prof Dr Bélen Pérez González (PhD, Spain) has accepted the invitation of joining CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies - PPAIN). Prof Pérez González has been developing work in the field of CDG related to diagnosis and therapy development. Consequently, it is with great joy and expectation that we welcome her into our Reserach Network.
For more information, please download the press release below: |
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These projects will develop better insight into families of children with rare illnesses. CDG is a serious and chronic rare metabolic disease for which there is no cure. The uncertainty, conflicting information, misdiagnosis, frequent trips to different doctors and specialists cause stress and anxiety in patients and in their family members. In order to boost visibility for the emotional needs of CDG patients and family members, the Portuguese Association for CDG (APCDG) is leading two pioneer research projects in collaboration with Pf Liz Forbat (Australia) and Pf Luísa Barros (Portugal). Both projects aim to better understand CDG symptoms, the family experience with the disease, the emotional impact and the relational impacts of ill health.
Taking advantage of the connections and resources created by CDG & Allies - Professionals and Patient Associations International Network, two patient-centred research projects will begin this month. Simultaneously, a new social media campaign will also have its debut. #CDGBelieve/#CDGAcredita aims to motivate and inspire the population in general, and the CDG community in particular. |
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Our work is publicly available to help the CDG community and related rare disease communities. Importantly, 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. |