What is CDG & Allies - PPAIN? |
CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies - PPAIN)
With the help of a broad network of scientists, physicians, families and patient advocacy groups, we have established a patient-led national and internationally unrivaled infrastructure for research, awareness and education for CDG. The research on Glycosylation disorders is primarily dedicated to Congenital Disorders of Glycosylation (CDG). The advances and innovations achieved for CDG through CDG & Allies - PPAIN will impact on a large number of patients. Namely, the overall human diseases characterized by abnormal protein glycosylation such as cancer, inflammation, Alzheimer's disease and diabetes. To learn more about this working group please access to Pf Paula Videira's presentation available at http://www.apcdg.com/education.html What are the specific objectives?
|
Executive Committee |
CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies - PPAIN)
|
Dorinda da Silva, PhD: Dr Silva, received her Biochemistry degree in University of Algarve – Faro, Portugal. She defended her PhD thesis on “Study of redox and calcium transport systems microdomains in the plasma membrane of neurons”, in University of Extremadura – Badajoz, Spain. Her work is developed under the scope of the CDG & Allies – Professionals and Patient Associations International Network (CDG & Allies – PPAIN). She integrated our working group since beginning February 2016. Dr Dorinda is highly motivated to make a difference in patients lives. |
Anna Lund, mother to Elmer who suffers from CDG (both in the photo), invented the CDGInfusion with the aim of collecting donations to support research and increase awareness.
The CDG infusion, contains Chai, Dyeberry and Gojiberry, all berries started with the letters of Elmer's metabolic disorder CDG. To make the infusion even tastier, Anna added also rose hip, apple bits, strawberries and hibiscus. Anna partnered with several CDG Patient Associations. Amongst them the Portuguese Association for CDG (APCDG). Together, we set up the campaign: “One Donation for CDG research and awareness = One CDG Infusion” which intends to collect donations to support the priority research projects mentioned previously. DONATE now at: http://www.apcdg.com/get-involved1.html |
CDG Research funding remains a major challenge and a pressing unmet need. Government institutions and pharma/biotech companies dedicate very limited funding for research on CDG. With the goal of overcoming this great barrier, the Portuguese Association for CDG (APCDG) announced a partnership with NABIA Olive Oil Cosmetics (more information visit HERE), being the fundraising campaign "A Biocosmetic for CDG Biomedical Research" the first co-joint initiative. |
Newsletter
|
|