Congenital Disorders of Glycosylation (CDG) is a group of rare and unknown diseases and although more patients are diagnosed with CDG and also new types of CDG are discovered, there is still an under- or misdiagnosis. There is also no medicine for CDG. It’s therefore important that CDG gets worldwide attention.
In the light of the lack of awareness and visibility for Congenital Disorders of Glycosylation (CDG), the world CDG community takes the step to formally request from the World Health Organization (WHO) the declaration of an anual World Congenital Disorders of Glycosylation (CDG) Awareness Day. The World Congenital Disorders of Glycosylation (CDG) Awareness Day campaign aims to:
Be the platform to promote CDG awareness, visibility and advocacy efforts
Promote and synergize CDG research
Be the global driver to boost coordinated and concerted actions to confront CDG as a critical global health issue
To make 16th May an annual official day, the World Health Organisation (WHO) must first give its approval. It’s not so easy to make that happen and that’s why we are asking you for help. Patients, family members, patient organisations and healthcare professionals are joining forces in order to hold an annual World Congenital Disorders of Glycosylation Awareness Day on 16 May.
And you…. How are you planning to join us for the World Congenital Disorders of Glycosylation Awareness Day on 16 May?
CDG Awareness is like the sun. When it shines on things, they are transformed”. adapted from Thich Nhat Hanh.
The World Congenital Disorders of Glycosylation (CDG) patients voice is an united community dedicated to fight against the impact a rare disorder called Congenital Disorders of Glycosylation (CDG). If you have not heard of it, that is because is a Rare disease. The most common type of CDG , named PMM2-CDG, affects about one in 20,000 people. So far, only around 900 patients have been accurately identified with PMM2-CDG, suggesting that many CDGs cases are under-or misdiagnosed than what is documented.
In the light of the lack of awareness and visibility for Congenital Disorders of Glycosylation (CDG), the world CDG community takes the step to reinforce our request among the World Health Organization (WHO) to get the declaration of an annual World Congenital Disorders of Glycosylation (CDG) Awareness Day.
To achieve this, we will celebrate May 16 as World Congenital Disorders of Glycosylation (CDG) Awareness Day! We are happy to share the top 9 Tips to spread the word worlwide for CDG!
Congenital Disorders of Glycosylation (CDG) urges all those who feel committed, especially patients and families, and directly those working in health, education, and social and legislative areas to express their support for the application for our annual World Congenital Disorders of Glycosylation (CDG) Awareness Day by organizing events, signing the public online petition, reading our manifesto and sharing information amongst your contacts.
Sign and share our Online Public Petition to support 16th May (day of birth of Pf Jaeken’s, the medical doctor that reported the first CDG patients more than 30 years ago) available HERE
Congenital Disorders of Glycosylation (CDG) are one of the fastest growing groups among the more than 8000 rare diseases currently known. If you have not heard of CDG, that is because it only affects about one in 20,000 people, which means that it is a Rare Disease (RD)! You can imagine the loneliness of having CDG, a disease that most people have never heard of, that most forms has no treatment, and that few laboratories are dedicated to find cures.
To break the isolation and to raise awareness for rare diseases like CDG, the Europe an Organisation for Rare Diseases (EURORDIS) organizes the International Rare Disease Day. The activities are done in collaboration with numerous worldwide partners aimed at highlighting the rare diseases as a global priority health challenge. This year the International Rare Disease Day takes place, on the rarest day of the year, on February 29th. Although, activities are done throughout the month of February. The theme for 2016 is: “Patient Voice: Join us in making the voice of rare diseases heard”. Several online resources to help spread the word that 29 February 2016 is the Rare Disease Day, are now available. This includes the 2016 Rare Disease Day video.
The video celebrates the special moments in the lives of people living with a rare disease. Source: Rare disease day website.
“Society needs to know that Congenital Disorders of Glycosylation (CDG) is a serious cause of death and disability. Patients and family members, suffer directly the consequences of living with a disease, for which the most forms do not have a cure. Then, because of the high variety of CDG symptoms and the resemblance to other diseases, diagnosis of CDG is very demanding and may take many years. This has a big emotional impact on families lives.” highlights Rosália Félix, mother to an adult CDG patient and vice-president of the Portuguese Association for CDG.
The courses include several keynote sessions given by distinguished Portuguese and international speakers. Pf Jaak Jaeken (Belgium), medical doctor that first reported CDG in the medical literature in 1980, will give an overview of CDG. Pf Eva Morava (USA and Belgium) and Pf David Cassiman (Belgium) compose the prestigious international panel of speakers. Other topics will be addressed, including immunological aspects of CDG, diagnostic algorithms for CDG and the challenges encountered by families and professionals in this field. In addition, clinical cases will be shared and discussed. The ultimate goal of these courses is to promote accurate diagnosis and to share experience in the management and outcome of CDG.
Another initiative is the World CDG Awareness toolkit designed for patients, patient groups,and anyone interested in making the CDG voice heard among media, government and related stakeholders. The freely-accessible toolbox includes CDG disease facts, infographics, videos, materials that can be easily used on social media like the CDG awareness Facebook cover, the email signature that support the World Rare Disease on behalf of the CDG community, print-ready materials and so forth.
Several tips to raise CDG awareness using social media and other resources are now available to be used by families and friends willing to make the CDG heard! Source: Portuguese Association for CDG.
The APCDG, is also leading the petition directed to World Health Organization (WHO) to declare 16th May as the annual World Congenital Disorders of Glycosylation (CDG) Awareness Day. The manifesto and the communication material are publicly available for CDG patient advocacy groups, their representatives, families, friends and professionals to support this public petition.
“The patient-driven initiatives recently launched show our efforts to increase awareness for CDG. The patients, families and professionals suffer the direct consequences of the limited awareness that CDG has among the society.” says Rosália Félix, Portuguese Association for CDG.
Last but not least, the APCDG developed several website sections aimed at giving visibility to the ground-breaking work performed by this non-profit organization. These sections are focused on education, resources and research. Of special interest, is the recently formed CDG Professionals and Patient Associations Working Group (CDG-PPAWG). This research platform was formed with the help of a broad network of scientists, physicians and patient advocacy groups. A unique patient-led unrivalled infrastructure for research and treatment of CDG, was formed. Accelerating research into cures is the main goal.
Families and professionals, are embracing the challenges of CDG. United, they make an important difference in the lives of patients and their family members.The voice of Congenital Disorders of Glycosylation (CDG) in 2016, will be heard!
Find out more about the Portuguese Association here