WCDGO | a new user-friendly website to showcase practical signposting for the CDG community
Who are the WCDGO?
World Congenital Disorders of Glycosylation Organization (WCDGO) is led and operated by CDG & Allies – Professionals and Patient Associations International Research Network (CDG & Allies – PPAIN). Working together to provide a strong voice to influence governments, researchers, clinicians and industry. WCDGO work hard to promote research, diagnosis, treatment and services for the congenital disorders of glycosylation (CDG) community.
As a united voice for people living CDG, the WCDGO exists to raise awareness and transform the world’s understanding of CDG.
World CDG Organization focus on working together to achieve A2.C3.U2.R3.E2, to support practices that:
- advance Awareness and Advocacy
- implement standards of Care, boost Collaboration and encourage Clinical trials
- build Union to help break the isolation of the people living with CDG
- accelerate Understanding of CDG
- enable Research, facilitate Resources as community support services and enhance involvement within Regulatory bodies
- Engage and Educate people living with CDG and patient organizations about diagnosis, standards of care, research, drug development and access to therapies.
The new WCDGO website is easy to navigate and can be translated into many languages. With a modern, minimalistic design it reflects WCDGO’s clear mission: to improve the lives of people living with CDG and their family members.
Highlighting the importance of plain lay language for effective communication and empowerment for the CDG community
The information on the website is written in an inclusive writing style, also known as plain lay language. This simplified style is oriented towards a non-scientific audience. The website includes information on the importance of plain lay language in science and research communication to ensure healthcare professionals communicate clearly to individuals living with CDG, their families, and the general public.
When doctors make the effort to communicate in a simplified manner, patients feel validated and have a better understanding of their clinical situation; therefore, they’ll be more likely to cooperate while being treated and be more trusting, leading to improved doctor–patient relations.Salvador Magrinho Sci and Volunteer Program Nova School of Science and Technology 2021
One of the biggest challenges for individuals living with CDG and their families is the lack of non-technical literature. A study by the Centers for Disease Control and Prevention (CDC) found that almost half of all American adults have basic or below basic health literacy skills.
The CDC defines health literacy as “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions.
This lack of understanding can often make it more difficult for individuals to make informed decisions and actions about their health, which often hinders the treatment process. Providing individuals with accessible health information will mean patients are less likely to visit an emergency room, have fewer hospital stays, are more likely to follow treatment plans, and have a lower mortality rate.
To read more information on the importance of plain lay language and the benefits of increased health literacy, visit the WCDGO website under Empowerment for CDG Community.
Raising awareness for caregivers and medical experts, as well as those living with CDG, through new, shareable infographics
Click the images above to access downloadable resources.
WCDGO offers free, downloadable infographics on the “About CDG” and “Resources” section on the website. WCDGO hope the infographics will help raise awareness of CDG, including its signs and symptoms, and highlight the importance of CDG care and management. The infographics include an overview of CDG (causes, symptoms, treatment, history, etc), a CDG diagnostic roadmap, and major signs and symptoms of PMM2-CDG (the most common type of CDG). Many more infographics on lesser-known CDG types, such as FUT8-CDG, ALG6-CDG, and MAN1B1-CDG are also available. Steps to share and present the CDG infographics with schools and medical/research centres are provided. The infographics are available in several different languages and some infographics are available to download in different sizes (A4, A2, A0). Infographics can be accessed here:
Staying up-to-date on the process and development of CDG treatment
A new page on the WCDGO website supports individuals living with CDG and their families in being actively involved and informed in treatment development. The easy-to-understand graphs provide information on what is in the pipeline for dietary replacement therapies and non-dietary therapeutic approaches. The graphs list the type of drug and whether it is in a pre-clinical stage, phase 1, 2 or 3, or already approved. Sharing this information with CDG families enables more informed decision making around their health care options now and in the future.
Enabling CDG individuals to stay informed on clinical trials and research studies for CDG
A dedicated to upcoming or actively recruiting trials and research studies as well as information on completed and determined trials keeps families informed about investigational treatments. Information on the industry or institution conducting the study, the study name, therapeutic approach, eligibility, study type, and contact information to get involved is included. Information and contact information for upcoming clinical trials can be accessed here:
Your help is needed to make a change in the CDG community: an international study to CDG journey mapping
WCDGO is looking for participants for two online surveys to boost CDG research and improve the quality of life for CDG individuals. Survey 1: “Prioritizing symptoms impacting quality of life for CDG” can be taken by all CDG patients, family members and caregivers. The study evaluates symptom prioritisation for the development of new and improved therapies for symptom relief among people living with CDG, as well as current care and management across all CDG types. Survey 2: “CDG experiences over time from families’ and professionals’ views” is split into two surveys: one for people living with CDG and their families and caregivers, and the other for professionals, biotech and related stakeholders. The study corresponds to part 2 of an international study aiming to capture the full picture of people living with CDG from different perspectives. Both surveys can be participated in anonymously and will take an average of 45 minutes to complete; they can be saved and finished at a later date at any stage. For more information or to take part in either or both of these surveys visit:
Other features and signposting available on the WCDGO website
- A “Latest News” section which offers a free blog of all news relating to CDG. The blog includes a mixture of articles and video content.
- An “Upcoming Events” page lists all upcoming events of interest for the CDG community. A recent event included the 5th World Conference on CDG which ran from May 13 to May 16, 2021.
- Information on ways to get involved, including, taking part in World CDG Day, volunteering, becoming an advocate and sharing your CDG story.
- Information on COVID 19, including a statement by WCDGO, FAQs and important contacts.
Click the buttons below for WCDGO social media platforms: