New Website: www.researchcdg.com
CDG & Allies - Professionals and Patient Associations
International Network (CDG & Allies- PPAIN)
Where families’ own needs and ideas are transformed into research projects.
Our research model
Fomenting the research on rare diseases is essential to pave the way for therapeutic approaches and development, since for most of the patients there is still no treatment. In addition, experience says that any knowledge on the mechanism underlying rare diseases and its pathological manifestations will be beneficial, not only for those patients but also other patients with related pathological symptoms. Our patient-initiated research model:
CDG & Allies - Professionals and Patient Associations
International Network (CDG & Allies - PPAIN)
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?
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Executive Committee |
CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies - PPAIN)
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How we fund our projects?
The APCDG-DMR is leaded by affected family members that volunteer in an altruistic manner. We do not receive government funding.
WHY? Due to the rarity and complexity of CDG, public sector funding for research on conditions like CDG continues to be limited. This is a major barrier to progress on therapies for CDG.
To overcome this major barrier, the Portuguese Association for CDG leads several fundraising actions. We rely solely on donations in order to continue our projects. Thus, we know how to do a lot with very modest budgets.
However, we still need your donation contribution to help us do our work. 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 the Get involved section of our website at http://www.apcdg.com/get-involved1.html . If you wish further information, please write us at: sindromecdg@gmail.com.
DONATE now at: http://www.apcdg.com/get-involved1.html
WHY? Due to the rarity and complexity of CDG, public sector funding for research on conditions like CDG continues to be limited. This is a major barrier to progress on therapies for CDG.
To overcome this major barrier, the Portuguese Association for CDG leads several fundraising actions. We rely solely on donations in order to continue our projects. Thus, we know how to do a lot with very modest budgets.
However, we still need your donation contribution to help us do our work. 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 the Get involved section of our website at http://www.apcdg.com/get-involved1.html . If you wish further information, please write us at: sindromecdg@gmail.com.
DONATE now at: http://www.apcdg.com/get-involved1.html
Our crowdfunding projects
2014: The Campaign "One CD=One live CDG"
Luis Miguel Corrales, the grandfather of a child with an undiagnosed rare condition and the vocalist of this extraordinary project. He has partnered with the APCDG-DMR to launch this music CD with the title “For you, always", comprising well-known Latin American songs. See al information at: http://www.apcdg.com/what-we-do.html
The funds collected allowed us to:
- Award Maria Monticelli (Italy) with the Liliana Summer Research Scholarship 2015: This Scholarship provided a grant for 4 months of research, meals, student assurance and trip. Amongst the activities planned, Maria Monticelli performed (1) revisions of literature in topics poorly published, (2) translation of CDG resources from English to Italian, (3) Collaboration with professionals from the recent formed CDG & Allies – Professionals and Patient Associations International Network (CDG & Allies – PPAIN) and (4) Introduction to Glycoimmunology laboratory techniques.
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Maria Monticelli, was the candidate awarded with the Liliana Summer Research Scholarship 2015, a merit-based scholarship program focused on Congenital Disorders of Glycosylation (CDG). |
- Award Dorinda da Silva (Portugal) with the Second Liliana Summer Research Scholarship 2016: This scholarship provides 5 month research grant. Dorinda's activities are focused on learning more the liver affectation on CDG, completing the work done previously by Tiago Ferro and Maria Monticelli as well as generating patient and doctor friendly information.
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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. |
2015 and 2016: Campaign CDG infusion campaign
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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 |
Disclaimer: The information presented is intended to be used as a guide.
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