Awareness

1. This section refers to the Online Public Petition to support May 16th as the Annual World CDG Awareness Day. May 16th is the birth date of Prof. Jaeken, the medical doctor that reported the first CDG patients more than 30 years ago. This date was chosen by the CDG community.

You can support our public petition publicly available during February and March 2016 at:

https://www.change.org/p/congenital-disorders-of-glycosylation-cdg-world-awareness-day-on-may-16th

The World 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

The necessary documentation for CDG patient advocacy groups, their representatives, families, friends and professionals to support this public petition is found here. Please read the manifesto and use the communication material publicly available for this purpose.

AWARENESS for CDG is the key to accelerating therapeutic options! Please join us!

Help us raise CDG awareness globally, in all countries of the world. Add your name to our online public petition to make May 16th the World Awareness Day for CDG!

The Online Public Petition is available to sign February and March 2016 at: https://www.change.org/p/congenital-disorders-of-glycosylation-cdg-world-awareness-day-on-may-16th.

"Society needs to know that Congenital Disorders of Glycosylation is a serious cause of death and disability. Patients and family members suffer directly from living with this disease, for which the most forms do not have a cure", highlights Rosália Félix, mother to Princess Liliana (Portugal).

7 key reasons on why a World CDG Awareness Day matters:

1. The most common type of CDG , named PMM2-CDG, affects about one in 20,000 people. So far, roughly 900 patients have been accurately identified with PMM2-CDG. This suggests that many CDGs cases are under-or misdiagnosed.
2. Many CDG patients and their family members wait a long time until their condition is diagnosed, partly because many clinicians do not recognise the conditions and do not interpret the symptoms correctly.
3. The close family and friends of a CDG patient, who are wonderfully supportive, most probably are not able to name what our beloved CDG patients have, or how it impacts their body.
4. The probability of finding a health care provider knowledgeable of CDG is extremely low.
5. Most forms of CDG do not have a treatment. Thus, quality of life and survival of CDG patients depend on research and needed funding for the research.
6. Given the scarce research funding currently available for rare diseases, diseases with a lack of awareness such as CDG, represent a particular challenge for researchers working in this area.
7. The research, the funding, and hopefully, the cure will come, but not if CDG remains unknown within society! A World CDG Awareness Day is urgently needed!

WE CAN MAKE A DIFFERENCE! YOU CAN MAKE A DIFFERENCE!

Support us and Sign our Online Public Petition during the month of February 2016 and available at: https://www.change.org/p/congenital-disorders-of-glycosylation-cdg-world-awareness-day-on-may-16th

PRESENTATION

Given the lack of awareness of CDG, the world CDG community is taking steps to formally request that the World Health Organization (WHO) declare an Annual World CDG Awareness Day. To achieve this, an official online petition with campaigns for support from CDG patients, families, world CDG patients groups, professionals and institutions, whose signatures declare their ongoing support for this application, is being made to the World Health Organization.

Read the World Congenital Disorders of Glycosylation (CDG) Awareness Day Manifesto targeted to the World Health Organization (WHO):

REMEMBER, the materials may not be used for commercial or fundraising purposes.

On the occasion of celebrations during the month of February for World Rare Disease Day 2016, the CDG community has begun to disseminate the following manifesto that is directed to the WHO in which we ask for the support of people who feel concerned:

The World Congenital Disorders of Glycosylation (CDG) Patients Voice is a united community dedicated to fight against the impact of a rare disorder called Congenital Disorder of Glycosylation (CDG). If you have not heard of it, that is because it is a rare disease. The most common type of CDG , named PMM2-CDG, affects about one in 20,000 people. To date, roughly 900 patients have been accurately identified with PMM2-CDG, suggesting that many CDGs cases are under-or misdiagnosed.

CDGs are serious, chronic, life-altering and often life-threatening or fatal genetic diseases impacting multiple organ systems. The type and severity of problems associated with CDG vary widely among affected individuals, sometimes even among members of the same family[1]. Walking, jumping, climbing ladders, running, reading, talking and other common activities prove to be difficult, often impossible, in the majority of patients. The impact of this disorder goes beyond the physical manifestations of the disease. It includes economic burden, decreased productivity (both patient and caregivers), reduced social functioning, and lowered quality of life.

Currently, despite rapid advances in the field of Rare Diseases Research, fewer than 5% of rare diseases have drug therapies available[2].

Thus, most rare diseases, including most forms of CDG, still have no treatment options at all. Taking the risk on a drug for CDG children and adults may not promise returns as high as common drugs. Additionally, scientists are making great progress each day, but more funding for CDG research is needed.

CDG patients, are among the 36 million Europeans living with rare diseases. A disease in Europe is defined as rare, also known as an orphan disease, if it has a prevalence of less than 5 per 10 000. In the USA, a disorder is defined as rare when it is one that affects fewer than 200,000 individuals, or one in 10 Americans[3]. Rare diseases are believed to affect more than twice the number of all U.S. cancer patients! At least 30 million Americans and 36 million Europeans are affected by one of almost 7,000-8,000 orphan diseases[4].

The list of rare diseases increases by about 250 each year[5] (an average of five new conditions discovered every week[6]). It is estimated that approximately one out of five people personally know an individual suffering from a rare disease[7]. Indeed, it has been projected that for the top 350 rare diseases, approximately 27% of patients will not reach their first birthday[8]. This highlights the huge societal impact of these diseases.

You can imagine the loneliness of having CDG, a disease that most people have never heard of, for which most forms have no treatment, and that few laboratories are dedicated to finding cures. By adding Congenital Disorders of Glycosylation to the health topic list of the World Health Organisation and related governmental bodies, this will also open doors for other common disorders such as cancer! It will create awareness, access to resources and create opportunities for funding & research.

JOIN THE FIGHT! Sign our online petition and help us make 16th May, the official World Congenital Disorders of Glycosylation (CDG) Awareness Day —a day that can help save lives.

World Congenital Disorders of Glycosylation (CDG) Awareness Day is an initiative of the APCDG in full partnership with world CDG patient groups and representatives. Please contact us for more information: sindromecdg@gmail.com

Sources used to elaborate this manifesto:

[1] http://www.genecards.org/cgi-bin/carddisp.pl?gene=PMM2

[2] http://criteriuminc.com/wordpress/index.php/orphan-drug-development-why-they-are-so-important/

[3] http://www.phrma.org/sites/default/files/pdf/Rare_Diseases_2013.pdf

[4] http://features.blogs.fortune.cnn.com/2014/01/21/wall-streets-next-bet-cures-for-rare-diseases/

[5] http://www.bioresearchonline.com/doc/quantifying-the-potential-value-of-orphan-drugs-0001

[6] http://criteriuminc.com/wordpress/index.php/orphan-drug-development-why-they-are-so-important/

[7] http://www.checkorphan.org/grid/news/treatment/fighting-rare-diseases-pathway-from-orphan-drug-development-to-market-access

[8] http://www.ddw-online.com/therapeutics/p211490-challenges-and-opportunities-in-the-treatment-of-rare-diseases-spring-13.html

"CDG is the prototype of condition that cries out for urgent visibility and awareness-raising actions", emphasizes Alfredo Ferreira, father to a CDG patient.

Be part of the international movement and use the official World Congenital Disorders of Glycosylation (CDG) Awareness Day communication materials found here!

REMEMBER, the materials may not be used for commercial or fundraising purposes.

Our arguments are stated in a Manifesto available soon in 4 languages in which we ask for the support of people who feel concerned.

1. Manifesto in English
2. Manifesto em Português
3. Manifesto en Español
4. Manifeste en Français
5. Template Statement of Support from Patient Associations and their representatives to support World CDG Day
6. Template Statement of Support from Professionals to support World CDG Day
7. Letter collecting signatures to support 16th May as annual World CDG Awareness Day 
8. Letter from Pf Dr to WHO supporting the Declaration of World Congenital Disorders of Glycosylation (CDG) Awareness Day (soon available)

SOCIAL MEDIA RESOURCES TO HELP SPREADING THE WORD

Email signature:

How to get the Email signature that supports 16th May as the World Congenital Disorders of Glycosylation (CDG) Awareness Day?

• By clicking directly in the image on your right, you can choose and save the email signature that suits you.

The Benefits of an Email Signature:

1. An email signature shows your support to this initiative.
2. An email signature is a promotion tool for our cause.
3. An email signature is also a social networking tool.

Facebook banner

How to get the Email signature that supports 16th May as the World Congenital Disorders of Glycosylation (CDG) Awareness Day?

• By clicking directly in the image on your right, you can choose and save the email signature that suits you.

Advantages of using this Facebook advertising:

• The big advantage of Facebook advertising is how super-targeted we can make it.
• We will see our potential reach.
• It snowballs.

Name *PrénomNomEmail *Comment *

Submit