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Work Package 9 - Communication and Dissemination
CDG & Allies - Professionals and Patient Associations
International Network (CDG & Allies-PPAIN)
CDG one-to-one
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Work Package Leader (WPL): Fiona Waddell (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.
About Fiona Waddell:
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Email: fmmwaddell@gmail.com
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's portfolio and biography is available at www.fionawaddell.net
About Vanessa Ferreira
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).
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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 |
Future opportunities and collaborations:
Support our research, advocacy, awareness and education efforts now!
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Our work is publicly available to help the CDG community and related rare disease communities. Importantly, we do not receive government funding. We rely solely on donations in order to continue our projects. Consider to make a donation using Paypal, debit or credit card or bank transfer. |
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