1. Scope of policy
This policy sets out the basis on which any personal data We collect from you, or that you provide to Us, will be processed by Us. Please read the following carefully to understand Our views and practices regarding your personal data and how We will treat it.
The Website may contain links to and from the websites of Our partner networks and affiliates. If you follow a link to any of these websites, please note that these websites and any services that may be accessible through them have their own privacy policies and that We do not accept any responsibility or liability for these policies or for any personal data that may be collected through these websites or services, such as contact and location data. Please check these policies before you submit any personal data to these websites or use these services.
2. Information we may collect from you
World CDG Organization handles, processes and protects your personal data with the utmost care. Transparency is paramount. You can always request, change or remove your personal data registered with us, provided that this is permitted by law.
World CDG Organization collects and processes personal data for clear and predetermined purposes, throughout different ways such us:
- Submitted information: You may give Us information about you when you register to the Website (for example but not limited to, via the forum registration, the Newsletter subscription or the online donation platform, photographs or pictures), when you correspond with Us (for example by e-mail) or when you report a problem with the Website. The information you give Us may include your first name, last name, e-mail address, phone number, name of your organisation, password and other registration information and any comments you may have shared.
- Information We collect about you: Each time you use the Website, We may automatically collect some basic information of your use of the Website, including, but not limited to, traffic data (for example, information as the location from which the traffic originates and which particular pages within the Website are being viewed and for how long), weblogs and other communication data, IP addresses, details on your last log-in, details on the number and date of wrong password entries, details on password modifications and the resources that you access.
3. How do we use your information?
World CDG Organization naturally handles personal data confidentially. We usually process your information or data because you have consented to this. We may also process that information when we have a legitimate interest in so doing but any such legitimate interest does not override your rights in respect of this information. Examples of what we consider to be legitimate interests in this regard include providing you with information about our research, appeals, newsletters, events, campaigns, surveys, feedback and other activities.
We also process your information for a variety of purposes, including your personal information, as well as the following:
- To administer your membership, product or the service you have signed up for;
- To provide you with information about our work and activities;
- To ask you to participate in surveys, research or related CDG initiatives;
- To provide you with updates on the progress of research we are leading;
- To process donations, we may receive from you and gift aid; as well as to acknowledge receipt of donations and send you a thank you letter;
- To fundraise in accordance with our internal policies and procedures;
- To provide, personalise and improve the functioning of the Website made available;
- To secure the Website and prevent other Users from accessing your information and the materials that you submitted to the Website;
- To achieve our overall operations;
- To communicate with you for purposes related to the Website;
- To prevent and detect any misuse of the Website and/or fraud;
- To administer the Website for internal operations, including troubleshooting, data analysis, testing, research, statistical and survey purposes; and
4. Information sharing and disclosure
World CDG Organization does not disclose, give, sell, or transfer any personal information about our visitors, unless required for an emergency situation and/or as required by law, we may disclose your information in connection with the same.
For the purpose of communicating with our supporters, members and general public, we use and store data with the following companies. You can view the way that they handle your data by clicking on them:
- MailChimp – for all of our e-communications and sign ups
- Google – used for all of our office administration e.g Gmail,
- SurveyMonkey – used to complete voluntary surveys to accelerate CDG research, Clinical development including unmet needs and/or other topics
5. Your materials
World CDG Organization ensure confidentiality and safety of the materials that you submit to the Website ("Your Materials").
This Website has in particular security measures in place to protect the loss, misuse and alteration of the information under Our control. Security is the responsibility of Our hosting company. We have a contract with that company to ensure that personal data is protected by passwords, firewalls and other security measures.
6. Where is your information and how do we keep it safe?
We take our responsibilities very seriously and we have procedures and security features in place to try and keep your data secure once we receive it.
Our information is mainly hosted in what is commonly referred to as “the cloud”. Our hosting of that information uses various online IT systems specifically designed to protect the safety and confidentiality of your data via the use of encryption and other security measures. Whilst each member of our staff who is involved with processing your information is based in Portugal, our use of the IT systems referred to above may involve the provision of services by individuals and/or companies whose registered place of business is located outside the European Economic Area. We follow the Information Commissioner’s Office’s guidelines in our use of online IT systems.
Transmitting information over the internet is generally not completely secure, and we can’t guarantee the security of your data in transit. Any data you transmit to us over the internet is at your own risk.
7. Retention of your information
World CDG Organization stores your personal data in accordance with the GDPR. The data is not kept longer than is strictly necessary to achieve the purposes for which the data was collected.
8. The personal information about you held by us: your rights
You have the right to access and consult your personal data next to the right to correct, modify and update these personal data.
If you would like to exercise any of these rights please send us a message through our contact form.
10. Social media and other websites
Although our social media channels and Facebook groups are monitored regularly by the operations team, we have no control over information you or others may submit, post or share on social media or other websites – even where we link to them from our own website or they link to our website. When you use these sites you do so in accordance with the separate terms and conditions and policies of these sites.
World CDG Organization regularly review and update this policy to make sure it is accurate and simple to understand. This policy was last updated in updated in April 2020.
or by writing to us using the following address:
CDG & Allies - Professionals and Patient Associations International Network
Glycoimmunology Lab, Departamento Ciências da Vida (Lab 319)
Faculdade de Ciências e Tecnologia
Universidade Nova de Lisboa