Press kit and support
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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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Your donation will help fund advocacy efforts, awareness, education and research. All details are found at www.apcdg.com/donate.html THANKS!
The resources cannot be used for commercial purposes.
For further questions or suggestions please contact: sindromecdg@gmail.com
Press kit and support for the 16th May as the annual
World Congenital Disorders of Glycosylation (CDG) Awareness Day
"Awareness for CDG is like the sun. When it shines on things, they are transformed".- adapted from Thich Nhat Hanh
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Do you plan or do you want to plan an event to reinforce our request among the World Health Organization (WHO) to declare 16th May as the annual World Congenital Disorders of Glycosylation (CDG) Awareness Day?
We can help you communicating and disseminating your event, or we can give ideas to set up an activity. In that case write us to: worldcdgawareness@gmail.com |
Nothing will be as before! United to celebrate the 16th May as the World Congenital Disorders of Glycosylation (CDG) Awareness Day
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Responsible for Media and Communication Resources
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Fiona Waddell represents CDG within VKS, the Dutch Umbrella organization for metabolic diseases. When she was fifteen years old Fiona was diagnosed with MPI-CDG. She was the second patient in the world who was diagnosed with this illness.
Fiona was the first CDG patient who has had a liver transplant and due to the liver transplant, now she can lead a healthy life . She is journalist and our current major goal is to boost awareness for CDG community by (1) representing CDG within major leading Rare disease events, (2) volunteering in the production of many resources for CDG and (3) being responsible for media and communication resources for the 3rd World Conference on CDG 2017. Read more about Fiona at the Rare Commons interview "CDG patient Fiona hopes to create greater CDG awareness by using her journalistic skills" Fiona's biography is available at http://www.fionawaddell.net/Pagina/Biografie.htm Email: worldcdgawareness@gmail.com |
"CDG is the prototype of condition that cries out for urgent visibility and awareness-raising actions", emphasizes Alfredo Ferreira, father to a CDG patient.
ADVOCATE FOR CDG TO GOVERNMENT LEADERS, OR THE NEWS MEDIA
REMEMBER, the materials may not be used for commercial or fundraising purposes.
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Advocating for CDG to government leaders: we really want to encourage everyone in our patient community to email, mail a letter or call their elected officials to address some concerns of our rare disease community. Soon we will have a template letter for this purpose.
In Portugal, Correio do Cidadão is an easy system for you to email a letter on issues that concern you to your elected parliamentary groups and to the Republic Assembly president for Rare Disease Day. In USA, Rare Disease Legislative Associates (RDLA) and Congress web have an excellent system for you to email a letter on issues that concern you to your elected officials for Rare Disease Day. The Global Genes Project has a print and online collaborative resource that educates patient community on how to bring rare disease to capitol hill. |
Template letter for Government and Media
Goal: Write your government representatives and Media to explain why CDG and related rare diseases are important and why they need to pay more attention on this group of diseases.The template letter is also available in Spanish, French and Portuguese.
Please write us to access to the Word document and to receive more tips on how to address your letter: worldcdgawareness@gmail.com
Goal: Write your government representatives and Media to explain why CDG and related rare diseases are important and why they need to pay more attention on this group of diseases.The template letter is also available in Spanish, French and Portuguese.
Please write us to access to the Word document and to receive more tips on how to address your letter: worldcdgawareness@gmail.com
Template letter for Government and Media in English to Advocate for CDG and Rare Diseases
| template_letter_for_government_in_english_fv.pdf |
"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).
Symbol "16th May as the annual World Congenital Disorders of Glycosylation (CDG) Awareness Day"
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Tips to raise CDG awareness using Social Media on 16th May:
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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.
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
The necessary documentation for CDG patient advocacy groups, their representatives, families, friends and professionals to support this public petition is found at http://www.apcdg.com/world-cdg-awareness-day.html . Please read the manifesto and use the communication material publicly available for this purpose.
REMEMBER, the materials may not be used for commercial or fundraising purposes.
