Tips to raise CDG awareness using Social Media:
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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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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. |
Tips on how to use this resource:
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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 |
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_in_english_fv.pdf | |
File Size: | 362 kb |
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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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