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:
How is our model of Research organized?
CDG & Allies - Professionals and Patient Associations International Network (CDG&Allies-PPAIN) is organized in 12 different Working Packages(WP), each one representing a new area of research on CDG. Then, inside the WP are Working Groups (WG), which are made by teams of researchers, clinicians and families tackling a specific topic related to the WG.
Curious? Confused? Get in contact with us at sindromecdg@gmail.com
Curious? Confused? Get in contact with us at sindromecdg@gmail.com
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.
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.
What are the specific objectives?
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Do you want to know more about CDG&Allies - PPAIN?
How do 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. If you wish further information, please write us at: sindromecdg@gmail.com
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. If you wish further information, please write us at: sindromecdg@gmail.com
Volunteer Network coordinator advisor:
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 all the information at: http://www.apcdg.com/what-we-do.html
The funds collected allowed us to:
See all the 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 MonticelliWas the candidate awarded with the Liliana Summer Research Scholarship 2015, a merit-based scholarship program focused on Congenital Disorders of Glycosylation (CDG).
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- Awarded 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.
Dorinda da SilvaPhD: 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.
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- Awarded Rita Francisco (Portugal) with the Third Liliana Summer Research Scholarship 2016: This scholarship provids a 8 month research and communication grant. Rita integrated research projects focused on ophthalmology and cardiology, but also acted as a CDG Social media manager.
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Rita Francisco
Rita Francisco has a Masters’ degree in Molecular Genetics by the University of Minho and among her main scientific interests are genetic disorders. In 2016, she was awarded the 3rd Liliana Scientific Scholarship. In March 2017, she won a PhD scholarship awarded by Fundação para as Ciências e Tecnologias (FCT) and she is now dedicating herself to unravelling the immunological aspects of CDG. Rita is highly driven and motivated to make a difference in the lives of adults and children living with Congenital Disorders of Glycosylation (CDG). Her work is developed under the scope of the CDG & Allies – Professionals and Patient Associations International Network (CDG & Allies – PPAIN). In addition, she is our CDG patient advocate manager and CDG International Patient Relations.
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- Awarded Carlota Pascola (Portugal) with the Fourth Liliana Summer Research Scholarship 2018: This scholarship provids a 6 month research grant. Carlota is continuing her CDG and immunology study, but also focusing on patient-reported outcome tools for CDG.
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Carlota Pascoal
Carlota Pascoal has a biochemistry degree by Faculdade de Ciências da Universidade de Lisboa, and has concluded her MScs' on Biochemistry for Health at Instituto de Tecnologia Química e Biológica - Universidade Nova de Lisboa. In March 2018, she was awarded the 4th Liliana Scientific Initiation Scholarship.
Her main goal is to contribute for the improvement of Public Health, she is highly motivated and committed to''Assessing immune response in Congenital Disorders of Glycosylation''. Her research is developed under the scope of CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies - PPAIN). |
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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. |
2016: A Biocosmetic For CDG Biomedical Research
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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) announces 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. NABIA is a Portuguese start-up that R&D natural, hand-made biocosmetics and will devote 10% of their sales to fund the research done under the scope of our CDG & Allies – Professionals and Patient Associations International Network (CDG & Allies-PPAIN, for more information visit HERE). To know more about NABIA's concept, products, mission, values and the reason for their commitment to CDG Research, read the interview with Margarida Lopes, NABIA's CEO. Meet the person behind the project!
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