CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies- PPAIN)
Where families’ own needs and ideas are transformed into research projects.

How you can help CDG community ?

The APCDG-DMR is leaded by affected family members that volunteer in an altruistic manner. We do not receive government funding. We rely solely on donations in order to continue our projects. Thus, we know how to do a lot with very modest budgets. However, we still need your donation contribution to help us do our work. 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 are found below.
​If you wish further information, please write us at: sindromecdg@gmail.com.  
Read the poster on the right and learn how your donation makes a huge difference in our patients and families lives.

1. MAKE A SINGLE DONATION

How to do it?
  • Using Paypal, debit or credit card. 
  • Go to DONATE bottom found below and follow the instructions. It’s quick, easy, secure and you'll be making a difference today. Please note, when you use Paypal system, once the payment is performed  an automatic email confirming the payment is sent to you and to our organisation (APCDG-Associação Portuguesa CDG e outras Doenças Metabólicas Raras). 
  • Or performing a Bank Transfer; the account details are found below:
Please send us by email the proof of payment sindromecdg@gmail.com

ACCOUNT NAME: APCDG-DMR (Associação Portuguesa CDG e outras Doenças Metabólicas Raras)
BANK NAME: Banco Português de Investimentos (BPI)
NIB: 0010 0000 5149 8770 001 14
IBAN: PT50  0010 0000 5149 8770 001 14
SWIFT/BIC: BBPIPTPL
ADDRESS: Rua António Andrade, 1138-B, 2820-287 Charneca da Caparica
COUNTRY: Portugal

Support our research, 
​advocacy, awareness and
​education efforts now!

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.

2. DONATE BY RESEARCH PROJECT

Help us funding the CDG research that matters most to you by donating to a research projects in which our Association is a established partner.
When you donate you specify the research project of your choice:
  • Project leaded by Pf Pascale de Lonlay (CHU Paris - Hôpital Necker-Enfants Malades, France), who aims deciphering the mechanisms behind the stroke like episodes. Additionally, this project intends to evaluate possible therapeutic options.
  • Research coordinated by Dr Paula Videira (CEDOC) and Dr Vanessa Ferreira (APCDG): Project intended to increase our understanding about the mechanisms behind altered immune responses frequently observed in CDG patients. This will improve the quality of life of patients and their families.
  • Rarecommons a project leaded Dr Mercedes Serranoand driven by patients and family members.
  • Diagnosis of suspicious CDG samples using Transferrin isoelectrofocusing (Tf-IEF), a widely used to screen for Congenital Disorders of Glycosylation (CDG): this project consists in funding this screening technique. It is done in collaboration with Dr Dulce Quelhas.
Whichever project you pick, you’ll be helping to fund pioneering
work that will help to boost CDG knowledge.

How to support a specific research project?

  • Using Paypal, debit or credit card. Go to DONATE bottom previously available and follow the instructions. It’s quick, easy, secure and you'll be making a difference today. Please note, when you use Paypal system, once the payment is performed  an automatic email confirming the payment is sent to you and to our organisation (APCDG-Associação Portuguesa CDG e outras Doenças Metabólicas Raras). 
  • You can also perform a bank transfer. The account details are found in the section Make a single donation. Please specify which project do you specifically support. We kindly ask you, to send us by email the proof of payment at sindromecdg@gmail.com

     Become a member
Why become a member? The APCDG provides services that support the continuous exchange of experience and knowledge of our community through educating, informing and linking the families and professionals globally.

Membership Benefits: 
  • Access to literature, videos and patient-friendly information  
  • Access to connect and engage with families and professionals
  • Get our latest e-newsletter
  • Be a CDG patient advocate in high level conferences and related initiatives ( some of your functions might be presenting a poster or oral presentation).
Membership dues: minimum 10 euros annual membership.  
Write us if you are interested to be a member at: sindromecdg@gmail.com

     Give Time
Be a volunteer: We appreciate your desire to volunteer with the APCDG. 
Your work will be recognized. We provide different Volunteering Certificates to certify your voluntary work: Bronze for achieving 25 hours of volunteering, Silver for achieving 50 hours of volunteering and Gold for achieving 100 hours of volunteering. Please contact us at: sindromecdg@gmail.com and request our Volunteer form.
Please request at sindromecdg@gmail.com a Volunteer Form if you are interested in participating in any of our committees. 

We need volunteers to assist in several activities: 
World CDG Conference Event Coordination / Management  
Pre-Event
  • Identification and selection of venue
  • Public Relations
  • Sponsorships
  • Secretariat service
  • Translation of all resource material (booklet, registrations forms)
  • Elaborate conference book
  • Administration support
  • Communication service (Press releases, dissemination of information through massive emailing and social network)
  • Organisation of informal meeting for families
  • Kindergarten coordinator (identification and organization of activities targeted to children/adults)  

During the Event 
  • Registration desk 
  • Welcoming Committee
  • Photography / Videography
  • Member Meeting Coordination
  • Welcome Coordination
  • Preparing the summary of the event to be published 
  • Kindergarten Helper: assisting children and adults during the conference 
  • Evaluation Coordination
  • Photography / Videography 
  • Program elaboration 

Newsletter
  • Content (research and rights to reprint articles)
  • Coordination (collecting articles, typing, editing, checking word counts, coordinating with designer) 

Research 
  •  Help us write a funding application for CDG research
  • Identification of research grants  

     Fundraising
Fundraising events benefit our organization greatly, as the APCDG survives solely on the generosity and donations of our members, friends and family.  In order to safeguard against fraud, all APCDG fundraisers must be authorized in advance. To register a fundraiser, please contact Rosália Félix, at defesadopacienteapcdg@gmail.com

     Awareness
Please spread the word about CDG. Be creative! How? 

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