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. |
Are you planning or do you want to plan an event to support 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 |
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 |
File Type: |
"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).
Tips to raise CDG awareness using Social Media on 16th May:
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