World CDG Awareness toolkit
"Awareness is like the sun. When it shines on things, they are transformed".
- Thich Nhat Hanh
- Thich Nhat Hanh
Image adapted from source: Global genes.
VERY IMPORTANT, PLEASE READ IF YOU USE OUR WORLD CDG AWARENESS TOOLKIT:
The resources can not be used for commercial or fundraising purposes. For further questions or suggestions please contact: sindromecdg@gmail.com
Our work is publicly available to help the CDG community and related rare disease communities. Importantly, our resources are done by volunteers. 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. Your donation will help fund advocacy efforts, awareness, education and research. All details can be found HERE
THANKS!
The resources can not be used for commercial or fundraising purposes. For further questions or suggestions please contact: sindromecdg@gmail.com
Our work is publicly available to help the CDG community and related rare disease communities. Importantly, our resources are done by volunteers. 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. Your donation will help fund advocacy efforts, awareness, education and research. All details can be found HERE
THANKS!
Be a Congenital Disorders of Glycosylation (CDG) Disease Advocate!
How You Can Help Raise CDG awareness?
VERY IMPORTANT, PLEASE READ IF YOU USE OUR WORLD CDG AWARENESS TOOLKIT:
If you use our CDG awareness toolkit, please refer your source of information as:
Portuguese Association for CDG (APCDG, www.apcdg.com). The CDG awareness toolkit belongs to the "World CDG Awareness. Education. Diagnosis. Program 2015-2017" created and coordinated by the Portuguese Association for CDG (APCDG, www.apcdg.com).
The target audience for our suggested world CDG awareness activities are: Individuals, patient advocacy groups, researchers, medical doctors and related stakeholders.
If you use our CDG awareness toolkit, please refer your source of information as:
Portuguese Association for CDG (APCDG, www.apcdg.com). The CDG awareness toolkit belongs to the "World CDG Awareness. Education. Diagnosis. Program 2015-2017" created and coordinated by the Portuguese Association for CDG (APCDG, www.apcdg.com).
The target audience for our suggested world CDG awareness activities are: Individuals, patient advocacy groups, researchers, medical doctors and related stakeholders.
USING SOCIAL MEDIA
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Tips to raise CDG awareness using Social Media:
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Inspirational campaigns to boost CDG awareness
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#SweetThankU campaign - a campaign to thank all of those who participated on the World CDG Awareness Day 2016 (posts were dissiminated from September 26th to October 4th on SindromeCDG page and on World CDG Awareness Day)
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The motivational campaign #CDGBelieve/#CDGAcredita was a bi-lingual campaign (Portuguese and English), which ran on social media channels (SindromeCDG page, @CDG_Portugal, LinkedIN) throughout November 2016 with the aim of spreading empowering words in order to help families overcome the emotional impact of these rare diseases by showing them that they are not alone.
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In February 2017, under the scope of the #RareDiseaseDay celebrations another campaign was done to promote awareness. Post were created to celebrate rareness and research in rare diseases. Because "With Research, Possibilities are Limitless"
Overall, APCDG actions, have a single goal: A. C.U.R.E., which stands for boosting Awareness with a Community United that leads Research, Resources and increases Empowerment and Education among the patient and professional CDG community. If you would like to have any of these posts or share them on your social media network channels, send an email to rita.francisco.28@gmail.com.
All post will be made freely available. |
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Make Congenital Disorders of Glycosylation (CDG) voice heard!
FEW STEPS TO MOUNT YOUR PHOTO AND MAKE CDG VOICE HEARD.
FOLLOW THE INDICATIONS 1, 2 AND 3 on the right side (SEE IT BELOW)!
FOLLOW THE INDICATIONS 1, 2 AND 3 on the right side (SEE IT BELOW)!
In summary the steps are:
- Do select file to choose the photo. Then, upload the photo (wait few seconds)
- Choose the frame you wish among the 11 available. Do SELECT bottom
- Save the frame with the photo in format IMG. And now you can post on your facebook
Just 3 steps to make CDG voice heard:
CONGENITAL DISORDERS OF GLYCOSYLATION (CDG)
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7. Change your Facebook cover to the CDG awareness Facebook cover
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8. Use the Email signature that support the World Rare Disease on behalf of the CDG community
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9. Share CDG disease facts (there are in total 29. You can publish one per day during for example the celebrations of the World Rare Disease day held on the last day of February)
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9. Watch and Share the videos aimed to boost awareness for CDG. They give a simple, yet informative explanation of what is living with CDG.
Watch and Share the video about Aina's live with the following proposed message (SOON AVAILABLE):
Aina is a 5-year-old girl, joyful and happy, affected by a rare disease called CDG (Congenital Disorders of Glycosylation). Aina is one of the 69 patients diagnosed in Spain and one of the 900 cases known worldwide. The Sweet Battle aims to boost recognition and visibility of CDG, and raise awareness about the urgency to promote scientific and medical research of all these rare diseases affecting 350 million people worldwide.
Aina is a 5-year-old girl, joyful and happy, affected by a rare disease called CDG (Congenital Disorders of Glycosylation). Aina is one of the 69 patients diagnosed in Spain and one of the 900 cases known worldwide. The Sweet Battle aims to boost recognition and visibility of CDG, and raise awareness about the urgency to promote scientific and medical research of all these rare diseases affecting 350 million people worldwide.
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Watch and Share the Official clip of "Ordinary Life" by Very Jane with the following proposed message:
This is the first single of the upcoming album by Very Jane due for release later in 2013. This video is dedicated to the memory of Estelle & Temperance Blechynden and to help raise awareness for the rare genetic disorder CDG 1a. CDG is a serious disease that encompass a wide variety of disorders and symptoms. There is no specific therapy for most forms of CDG. |
The CDG fairy-tale is another powerful resource to raise CDG awareness !
It is available in 11 languages
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Tips on how to use this resource:
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USING STORYTELLING TO RAISE AWARENESS FOR CDG
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Storytelling allows patients to share insights, learn from each other, and work together. If you want to share your story, upload it to CDG community rareconnect or to the Rare disease website and it will be shared with followers around the world! Also, share it with us on Facebook or on our APCDG Youtube Channel . Existing blogs from CDG families: The special mom by Melissa Schlemmer A little ladybug hugs by Melissa Nimijohn Miracle of...my Squish by Christina O'Neal-Deutsch |
The Global Genes Project has a print and online collaborative resource that educates rare disease advocates about how to write your story and guaranteeing awareness for a rare disease. Each toolkit includes a resource section, FAQ section, video tutorials and patient advocate/ expert testimonials. The one dedicated to storytelling is available at Global Genes Project Website.
ADVOCATING FOR CDG TO GOVERNMENT LEADERS, OR THE NEWS MEDIA
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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
Goal: Write your government representatives and explain why CDG and related rare diseases are important and why they need to pay more attention on this group of diseases.
Please write us to access to the Word document and to receive more tips on how to address your letter: sindromecdg@gmail.com
Goal: Write your government representatives and explain why CDG and related rare diseases are important and why they need to pay more attention on this group of diseases.
Please write us to access to the Word document and to receive more tips on how to address your letter: sindromecdg@gmail.com
Template letter for Government in English to Advocate for CDG and Rare Diseases
| template_letter_for_government_in_english_fv.pdf |
Carta Modelo em Português dirigida ao governo para a inclusão dos Defeitos Congénitos da Glicosilação (CDG) e doenças relacionadas na agenda dos temas de saúde
Carta modelo en Español dirigida al gobierno para la inclusión de los Defectos Congénitos de Glicosilación (CDG) y enfermedades relacionadas en la agenda de temas dedicados a la salud
Modèle de lettre en Français pour écrire au gouvernement et défendre l'inclusion des Anomalies Congénitales de la Glycosylation (CDG) et ses maladies associées dans les sujets de santé du gouvernement
Advocating for CDG to the news media:
Use our Press Material: In order to make your story out there as easy as possible for producers and journalists, we will have soon press material with issues that concern the CDG community to help you along the way. Tips on how to spread the word within the media will be given.
Use our Press Material: In order to make your story out there as easy as possible for producers and journalists, we will have soon press material with issues that concern the CDG community to help you along the way. Tips on how to spread the word within the media will be given.
Please write us to access to the Word documents of our Press Material available below and to receive more tips on how to address your letter to the media: sindromecdg@gmail.com
EDUCATING ABOUT CDG WITHIN LOCAL SCHOOLS, MEDICAL INSTITUTIONS, RESEARCH CENTERS OR YOUR WORK PLACE
WHY? Many CDG cases continue unrecognized or misdiagnosed.
GOAL: To improve CDG knowledge by appropriate education, training and information resources aimed at developing health professionals’ skills to make appropriate referrals and to be informed when to consider that a patient may have CDG.
HOW? Giving talks within target institutions.
GOAL: To improve CDG knowledge by appropriate education, training and information resources aimed at developing health professionals’ skills to make appropriate referrals and to be informed when to consider that a patient may have CDG.
HOW? Giving talks within target institutions.
STEPS
- Speak with the target institution about allowing you a timeslot to use (for example, during the class’s schedule or breakfast or lunch time).
- Download and print our infographics to be exposed/distributed to the target audience. This is patient-friendly material directed to families, professionals and the overall society. It is publicly available for immediate printing at HERE
- Download our CDG awareness Kit to be used as inspiration during the production of your own powerpoint. These resources are available in English, French and Spanish. The Powerpoint presentation and videos from the World Conferences on CDG might help you to prepare your presentation. It is available HERE
- Give your 15-20 minutes talk by presenting your PowerPoint or the infographics and remind the audience to (1) Visit our Website; (2) Follow us on Facebook or to Contribute to our online fundraising campaign
- Take pictures and share a recap of your event with us on our Facebook as well as on CDG Global Alliance Facebook page or APCDG Youtube Channel so we can feature it as well.
SUPPORTING RESEARCH THROUGH OUR ONLINE CDG FUNDRAISING CAMPAIGN
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Fundraising benefit our organization greatly, as our non-profit association survives solely on the generosity and donations of our members, friends and family.
Only 2 clicks HERE, and your friends and colleagues can make a huge difference in our CDG patients and families lives. It’s quick, easy, secure and you'll be contributing today! How you can help us?
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In order to safeguard against fraud, all fundraising initiatives must be requested and authorized in advance. Additionally, partnership agreements to guarantee transparency are mandatory. To propose a fundraiser initiative, please contact us at sindromecdg@gmail.com
Disclaimer: The information presented is intended to be used as a guide.
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