"Awareness is like the sun. When it shines on things, they are transformed".
- Thich Nhat Hanh
Why May 16th?
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16th May is the day of birth of Pf Jaeken's, the medical doctor that reported the first CDG patients more than 30 years ago.
This was decided using doodle selection amongst the CDG community. Let's support this campaign to make May 16th the World Congenital Disorders of Glycosylation (CDG) Awareness Day! AWARENESS for CDG is key, to accelerate therapeutic options! Please join us! |
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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
"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", highlights Rosália Félix, mother to Princess Liliana (Portugal).
7 key reasons on why a World Congenital Disorders of Glycosylation (CDG) Awareness Day matters:
- 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. This suggests that many CDGs cases are under-or misdiagnosed than what is documented.
- 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.
- 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 functions in their body.
- The probability to find a health care provider that knows what is CDG is extremely low.
- Most forms of CDG do not have a treatment. Thus, quality of life and survival of CDG patients depend on research and funding.
- Given the scarce research funding currently available for rare diseases, diseases with lack of awareness such as CDG, represents a particular challenge for researchers working in this area.
- The research, the funding, and hopefully, the cures will come, but not if CDG remain unknown amongst the society! A World Congenital Disorders of Glycosylation (CDG) Awareness Day is urgently needed it!
16th May, the day of birth of Pf Jaak Jaeken, is the proposed day for the World Congenital Disorders of Glycosylation (CDG) Awareness Day.
PRESENTATION
In the light of the lack of awareness and visibility for Congenital Disorders of Glycosylation (CDG), in 2016 the world CDG community took the step to formally request from the World Health Organization (WHO) the declaration of an anual World Congenital Disorders of Glycosylation (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 declared their ongoing support for the application made to the World Health Organization to be granted.
The petition gathered signatures and a request to WHO to offciallt recognize May 16th as World Congenital Disorders of Glycosylation (CDG) Awareness Day has been submmitted!
The petition gathered signatures and a request to WHO to offciallt recognize May 16th as World Congenital Disorders of Glycosylation (CDG) Awareness Day has been submmitted!
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 the celebrations done during the month of February for the World Rare Disease Day 2016, the CDG community began to disseminate the following manifesto that is directed to WHO and in which we ask for the support of people who feel concerned:
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.
CDG are chronic serious genetic, life-altering and often life-threatening or fatal diseases due to multiple organ failure. 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 amongst other 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.
Nowadays, despite the rapid advances in the field of Rare Diseases, fewer than 5% of rare diseases have drug therapies available[2].
Thus, most of 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 needs to be given.
CDG patients, are amongst 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, that most forms has no treatment, and that few laboratories are dedicated to find 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.
AWARENESS for CDG is key, to accelerate therapeutic options! Please join us!
Help us raise Congenital Disorders of Glycosylation (CDG) awareness globally, in all countries of the world, add your name to our petition to make May 16th the World Awareness Day on Congenital Disorders of Glycosylation (CDG)!
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
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.
CDG are chronic serious genetic, life-altering and often life-threatening or fatal diseases due to multiple organ failure. 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 amongst other 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.
Nowadays, despite the rapid advances in the field of Rare Diseases, fewer than 5% of rare diseases have drug therapies available[2].
Thus, most of 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 needs to be given.
CDG patients, are amongst 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, that most forms has no treatment, and that few laboratories are dedicated to find 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.
AWARENESS for CDG is key, to accelerate therapeutic options! Please join us!
Help us raise Congenital Disorders of Glycosylation (CDG) awareness globally, in all countries of the world, add your name to our petition to make May 16th the World Awareness Day on Congenital Disorders of Glycosylation (CDG)!
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.
Manifesto in English
| manifesto_text_declaration_of_world_awareness_day_for_cdg_fv_04.pdf |
Manifesto em Português
| manifesto_em_portugues_v02.pdf |
Manifesto en Español
| manifiesto_del_día_mundial_de_concienciación_sobre_los_cdg_esp_v02.pdf |
Manifeste en Français
| manifeste_texte_declaration_journee_mondiale_cdg_16_mai_v02.pdf |
Template Statement of Support from Patient Associations and their representatives to support World CDG Day
| statement_of_support_from_associations_to_support_wcdg_day_fv.pdf |
Template Statement of Support from Professionals to support World CDG Day
| statement_of_support_from_professionals_to_support_wcdg_day_fv.pdf |
Letter collecting signatures to support 16th May as annual World CDG Awareness Day
| leaf_collecting_signatures_16th_may_as_annual_world_cdg_day.pdf |
Letter from Pf Dr to WHO supporting the Declaration of World Congenital Disorders of Glycosylation (CDG) Awareness Day
(soon available)
(soon available)
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