CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies- PPAIN)
Where families’ own needs and ideas are transformed into research projects.
Work Package 9
Communication and Dissemination
Work Package Leader (WPL):
Fiona Waddell | Email: fmmwaddell@gmail.com
(Journalist and responsible for Communication and dissemination resources).
Objectives:
The main goal of this Work Package is to ensure and enable efficient communication about the outcomes of CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies - PPAIN). We also wish to raise awareness about the brilliant work done by our CDG advocates and professionals. To achieve this goal, we launched on May 2016, the CDG One-to-One, a series of interviews with some of the greatest minds influencing and doing breakthroughs in the field of CDG. Read the interviews HERE.
WP9 is responsible for the dissemination of the findings, outcomes and results of the CDG & Allies- PPAIN. In order to guarantee maximum impact, adequate dissemination is key. It is the aim of WP9 to make available all useful implemented tools, guidelines and workflows developed within CDG & Allies- PPAIN to as broad an audience as possible. This also includes an identification of the most suitable tools for dissemination (publicity material, presentation formats etc.), descriptions of planned dissemination activities (press releases, presentation at relevant events etc.) and a schedule for the implementation of tools and activities. The efficiency of the plan will be assessed at regular intervals in cooperation with WP1 and if necessary there will be a process of refining, updating and amendment.
Dissemination will not only have to take place once results can be presented; it is equally important to raise awareness about the scope of the CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies - PPAIN). WP9 has created a CDG & Allies – PPAIN website for the publication of general project information.
WP9 is responsible for the dissemination of the findings, outcomes and results of the CDG & Allies- PPAIN. In order to guarantee maximum impact, adequate dissemination is key. It is the aim of WP9 to make available all useful implemented tools, guidelines and workflows developed within CDG & Allies- PPAIN to as broad an audience as possible. This also includes an identification of the most suitable tools for dissemination (publicity material, presentation formats etc.), descriptions of planned dissemination activities (press releases, presentation at relevant events etc.) and a schedule for the implementation of tools and activities. The efficiency of the plan will be assessed at regular intervals in cooperation with WP1 and if necessary there will be a process of refining, updating and amendment.
Dissemination will not only have to take place once results can be presented; it is equally important to raise awareness about the scope of the CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies - PPAIN). WP9 has created a CDG & Allies – PPAIN website for the publication of general project information.
Fiona Waddell was eighteen months old when the doctors discovered that she had liver fibrosis, but she always had problems which didn't fit the diagnosis. It was only when she was fifteen years old that she was diagnosed with MPI-CDG. She was the second patient in the world who was diagnosed with this illness. She was the first CDG patient who has had a liver transplant and due to the liver transplant she can now lead a healthy life.
Fiona received her bachelor of journalism in 2010. She now works as a journalist for different media and represents CDG within VKS, the Dutch umbrella organisation for patients with metabolic disorders. She wants to use her journalistic skills to create greater worldwide awareness around CDG in order to help other CDG patients and families.
Read more about Fiona at the Rare Commons interview https://www.rarecommons.org/en/actualidad/cdg-patient-fiona-hopes-create-greater-cdg-awareness-using-her-journalistic-skills.
Fiona's portfolio and biography is available at www.fionawaddell.net.
Fiona received her bachelor of journalism in 2010. She now works as a journalist for different media and represents CDG within VKS, the Dutch umbrella organisation for patients with metabolic disorders. She wants to use her journalistic skills to create greater worldwide awareness around CDG in order to help other CDG patients and families.
Read more about Fiona at the Rare Commons interview https://www.rarecommons.org/en/actualidad/cdg-patient-fiona-hopes-create-greater-cdg-awareness-using-her-journalistic-skills.
Fiona's portfolio and biography is available at www.fionawaddell.net.
Email: sindromecdg@gmail.com
From her unique perspective of being a sister of a patient with a rare disease named Congenital Disorders of Glycosylation (CDG) and Cell Biologist, Vanessa founded the Portuguese CDG Association and other Rare Metabolic Disorders (APCDG-DMR).
Vanessa’s personal journey with her sister, combined with the community needs, have been the impetus to focus the APCDG activities.
Vanessa received a bachelor’s degree in Biological Sciences from Badajoz University (Spain). She holds a PhD (Sc.D.) in Cell and Developmental Biology from the Center for Genomic Regulation, University of Pompeu Fabra, Biomedical Research Park in Barcelona (PRBB). In 2014, she completed her background with an International MBA from IAE de Paris, Sorbonne Graduate Business School.
From her unique perspective of being a sister of a patient with a rare disease named Congenital Disorders of Glycosylation (CDG) and Cell Biologist, Vanessa founded the Portuguese CDG Association and other Rare Metabolic Disorders (APCDG-DMR).
Vanessa’s personal journey with her sister, combined with the community needs, have been the impetus to focus the APCDG activities.
Vanessa received a bachelor’s degree in Biological Sciences from Badajoz University (Spain). She holds a PhD (Sc.D.) in Cell and Developmental Biology from the Center for Genomic Regulation, University of Pompeu Fabra, Biomedical Research Park in Barcelona (PRBB). In 2014, she completed her background with an International MBA from IAE de Paris, Sorbonne Graduate Business School.
Dr. Eleonora Passeri received her Ph.D. in Neuroscience from the Eberhard Karls University in Germany. After completion of her degree, she was a post-doctoral fellow in various prestigious US institutions, including the Harvard Medical School and John Hopkins Hospital. Early on during her academic career, she developed an interest in communication, which prompted her to lead Mind the Gap, an educational program aimed at bringing together young researchers and clinicians, to ameliorate communication and advance research. More recently, Dr. Passeri began building expertise and knowhow on social media campaigns and has been dedicating herself to raising awareness on Rare Disease and Mental Illnesses. Along the way, she has established a solid, international, and multi-disciplinary network spanning between research professionals and patient organizations. Her interests are focused on research, communication, and on bridging the gap between professionals, patients, and society. She hopes to contribute for CDG lives by voicing the problems of this community, boosting visibility and awareness as well as by sharing and divulging relevant scientific knowledge. In addition, Dr. Passeri is an evaluator for the European Commission and a consultant on scientific issues for several research institutions and patient organizations.
Open position!
Inés Summer Internship CDG for Undergraduate Students:
Currently the WP2 expressed interest in hosting a student to conduct summer research focused on diagnosis for CDG.
This position is available under the scope of the “1st Inés Summer Internship CDG Program for Undergraduate Students”.
This position is available under the scope of the “1st Inés Summer Internship CDG Program for Undergraduate Students”.
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