The Portuguese Association for CDG (APCDG) and CDG&Allies–Patients and Professionals Association International Network (PPAIN) are determined to raise funds to foment CDG research, the key to improve diagnosis, management and find therapies for such a group of rare diseases.
CDG are a family of rare metabolic diseases with more than 130 types identified and a wide and severe clinical spectrum. The majority of CDG still do not have a cure and targeted therapies are scarce. Although the immune system is often affected, and high child mortality numbers are due to severe and recurrent infections, CDG Immunology is still an unknown and unexplored field.
In line with the activities of the 16th May World CDG Awareness day, APCDG is launching a new fundraising movement and appealing to all community to join us in facing this urgent unmet need.
‘APCDG and CDG&Allies-PPAIN are devoted to accelerate research for all CDG types in an holistic manner. There is a high sense of urgency in the immunological knowledge for CDG because if we learn more about this area, it can really save lives and improve patients’ and family members’ life quality! The importance is clearly seen by the fact that other CDG patient groups are making a joint effort with us to address this and support this project financially. We are globally united to help CDG children and adults!’, said Rosalia Felix, mom to a CDG patient and APCDG founder and vice-president.
For the past 2 years, CDG&Allies-PPAIN invested in research to unravel immunological involvement in CDG (WG CDG & Glycoimmunology) after identifying the lack of knowledge in this area as one of the biggest needs from the patient perspective.
‘We witnessed that immune symptoms are extremely worrying for CDG families because each infection puts their kids in danger. Glycans and the immune response are interrelated influencing the function of every cell and system in our body. The more we investigate, create and share scientific knowledge, the more we contribute to the development of better and precise therapies to treat our patients’ explained Paula Videira, CDG&Allies–PPAIN director and Glycoimmunology Group Leader.
The fundraising campaign for the Immunology Project will be active from May 16th until May 31th and we encourage everyone that wish to be involved to visit, watch the video and donate HERE.
If you wish to obtain more information, do not hesitate to contact firstname.lastname@example.org.
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