APCDG - Congenital Disorders of Glycosylation
  • About US
    • What we do
    • Who we help >
      • Research
  • Resources
    • Rare CDG
    • Publications
    • Guia Metabolica
    • CDG Facts
    • Task Force CDG Communication >
      • PMM2-CDG (CDG Ia)
      • PGM1-CDG (CDG It)
      • ALG6-CDG (CDG Ic)
  • EDUCATION
  • Awareness
    • Get involved World CDG Awareness Day 2019 >
      • Go Social World CDG Awareness Day 19
      • Spread World CDG Awareness Day 19
      • Plan An Event World CDG Awareness Day 19
      • Frame your CDG Awareness Campaign 19
      • Go green! Think CDG! ©Campaign 19
      • Volunteer World CDG Awareness Day 19
      • Press kit World CDG Awareness Day 19
    • Map of events for World CDG Awareness Day 2019
    • CrowdCDG
    • Awareness Day 2018
    • Awareness Day 2017
    • Awareness Day 2016
    • Rare Diseases
  • Community
    • Join Us - Membership
    • CDG Patient Groups
    • Empowerment
  • Events
    • 1st CDG Satellite Meeting
    • Speakers - World Conference on CDG 2019
    • Registrations - World Conference on CDG 2019
    • Poster submission - World Conference on CDG 2019
    • Follow up - World Conference on CDG 19
    • Volunteer Registration - World Conference on CDG 2019
    • Previous Edition World Conference on CDG 2017 >
      • Follow up - World Conference on CDG 17
      • Speakers - World Conference on CDG 17
  • DONATE
  • BLOG

DONATE


How you can help CDG community ?

DONATE NOW !
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.

Picture

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). 
Picture

​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


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 Serrano and 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? 
  • Explain what it is like to live with CDG using our awareness toolkit sindromecdg@gmail.com
  • Spread the word about CDG using our infographics available HERE    
  • A simple email to spread the word can go a long way!
  • Sharing our posts on Facebook 
  • Explain CDG using the Fairy-tale “Glycoland and the coloured antennas” available in 10 languages
  • Purpose an activity. We can support you with resources such as slide kit tools. 

Contact us

Submit

Back to Top
Powered by Create your own unique website with customizable templates.
  • About US
    • What we do
    • Who we help >
      • Research
  • Resources
    • Rare CDG
    • Publications
    • Guia Metabolica
    • CDG Facts
    • Task Force CDG Communication >
      • PMM2-CDG (CDG Ia)
      • PGM1-CDG (CDG It)
      • ALG6-CDG (CDG Ic)
  • EDUCATION
  • Awareness
    • Get involved World CDG Awareness Day 2019 >
      • Go Social World CDG Awareness Day 19
      • Spread World CDG Awareness Day 19
      • Plan An Event World CDG Awareness Day 19
      • Frame your CDG Awareness Campaign 19
      • Go green! Think CDG! ©Campaign 19
      • Volunteer World CDG Awareness Day 19
      • Press kit World CDG Awareness Day 19
    • Map of events for World CDG Awareness Day 2019
    • CrowdCDG
    • Awareness Day 2018
    • Awareness Day 2017
    • Awareness Day 2016
    • Rare Diseases
  • Community
    • Join Us - Membership
    • CDG Patient Groups
    • Empowerment
  • Events
    • 1st CDG Satellite Meeting
    • Speakers - World Conference on CDG 2019
    • Registrations - World Conference on CDG 2019
    • Poster submission - World Conference on CDG 2019
    • Follow up - World Conference on CDG 19
    • Volunteer Registration - World Conference on CDG 2019
    • Previous Edition World Conference on CDG 2017 >
      • Follow up - World Conference on CDG 17
      • Speakers - World Conference on CDG 17
  • DONATE
  • BLOG