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Survey about achondroplasia
We have designed a questionnaire with the purpose to better know the population connected to achondroplasia.
The questionnaire is optional and anonymous. The data obtained will be used for statistical purposes and to better understand the natural history of achondroplasia. Please consider answering.
If you would like to take the survey later, you can click on the link at the top "Register at BA"

Introduction

Our commitment to protecting your privacy is paramount for Beyond Achondroplasia (ahead also as “BA”, “us” or “we”). The following privacy and cookies policy describes how we collect and use information about people who visit our website.
We will ask you to consent to our use of cookies in accordance with the terms of this policy when you first visit our website and more information on cookies can be found below.

If you have any queries about this policy please contact Inês Alves (Chief Executive) or Diogo Costa (Project Manager) at Beyond Achondroplasia, Avenida D. Leonor Fernandes, 46, 7005-144 Evora, Portugal or by email This email address is being protected from spambots. You need JavaScript enabled to view it..

Personal data collection and use

Personal data will be collected by means of a voluntary questionnaire that you may choose to reply or not and may include year of birth, gender, email address, country, advocacy website, medical history, work position, and we can also collect information on your participation in a clinical trial. BA will not share any of your data with third parties except for its use on selected research projects (public or private), approved by our advisory board, and to be used towards improving the knowledge in achondroplasia. All the data collected by BA will be encrypted and when shared for research or investigation purposes only, all the data will be anonymized.

Your personal information will help us to:

  • Provide you with the services or information that you asked for;
  • Administer your donation or support your fundraising including processing gift aid;
  • Keep a record of our relationship with you;
  • Ensure we know how you prefer to be contacted. BA will only send communications to those that have explicitly stated that they want for us to do so via newsletter or email.
  • Understand how we can improve our services and information;
  • With your consent we may contact you to let you know about the progress we are making and to ask for donations or your views on specific subjects. We do not sell or share personal details to third parties for the purposes of marketing but if we run an event in partnership with another named organisation, your details may need to be shared. We will be very clear what will happen to your data when you register.
 

How do we collect data? 

Directly

You may give us your information in order to access advice, to sign up for one of our events, tell us your story, make a donation, or communicate with us.  

Social Media

Depending on your settings or the privacy policies for social media and messaging services like Facebook, WhatsApp, Twitter or LinkedIn, you might give us permission to access information from those accounts or services.

Financial transactions

We use the following payment service providers:
  • Paypal - ANDO Portugal Account;
  • Bank transfer (Bank: Crédito Agrícola).

We will share transaction data with our payment services providers only to the extent necessary for the purposes of processing your payments, refunding such payments and dealing with complaints and queries relating to such payments and refunds.

You can find information about the payment services providers' privacy policies and practices at [URL].

-  Paypal

Website Provider

By submitting your personal information to BA, you agree to this transfer, storing or processing at a location inside the European Economic Area.

BA may need to disclose your details if required to the police, regulatory bodies or legal advisors. BA will only ever share your data in other circumstances if we have your explicit and informed consent.

Retaining and deleting personal data

You have a right to ask us to stop processing or delete your personal data, and if it’s not necessary for the purpose you provided it to us for (e.g. contacting our email, processing your donation) we will do so.  Contact BA by This email address is being protected from spambots. You need JavaScript enabled to view it. if you have any concerns.

You have a right to ask for a copy of the information we hold about you. If there are any discrepancies in the information we provide, please let us know and we will correct them.

You have the right to complain to the Portuguese regulatory agency (CNPD-Comissão Nacional de Proteção de Dados) when data protection may have been breached and not rectified.

Your data may also be available to our website provider to enable us and them to carry out analysis and research on demographics, interests and behaviour of our users and supporters to help us gain a better understanding of them so we can improve our services. In this case, we will previously get in contact with you to request your permission.

In the case of this activity the following will apply:

  • Your data will be made available to our website provider
  • The data that may be available to them include any of the data we collect as described
  • Our website provider will not transfer your data to any other third party, or transfer your data outside of the EEA.
  • They will store your data for a maximum of 7 years.

How do we keep your data safe?

We ensure that there are appropriate technical controls in place to protect your personal details.  In this matter, our online forms are encrypted and our network is protected and routinely monitored. 

Your information will be only accessible by appropriate BA staff.

Should we use external companies to collect or process personal data on our behalf, we do comprehensive checks on these companies before we work with them, and put a contract in place that sets out our expectations and requirements; especially regarding how they manage the personal data they have collect or have access to.  

If you want to access your information, send a description of the information you want to see and proof of your identity by post to Beyond Achondroplasia Chief Executive, Inês Alves, Av. D. Leonor Fernandes, 46, 7005-144 Evora, Portugal.   We do not accept these requests by email so we can ensure that we only provide personal data to the right person.

Personal data that we process for any purpose or purposes shall not be kept for longer than is necessary for that purpose or those purposes.  We will retain and delete your personal data as outlined in our record keeping policy.  A copy can be requested by emailing This email address is being protected from spambots. You need JavaScript enabled to view it.
 
Cookies

Cookies are small text files that are placed on your computer by websites that you visit. They are widely used in order to make websites work, or work better, as well as to provide information to the owners of the site. A cookie often contains a unique number, which can be used to recognise your computer when a user of your computer returns to a website that it visited previously.

We use cookies to enhance the online experience of our visitors, to better understand how our website is used and to monitor how our advertisements perform. Cookies may tell us, for example, whether you have visited our site before or whether you are a new visitor.

Your rights

Our cookies do not store financial information or information which is capable of directly identifying you (such as your name or address). You have the right to choose whether to accept these cookies. You can exercise this right by amending or setting the controls on your browser to reflect your cookie preferences. However, please note that if you choose to refuse cookies you may not be able to use the full functionality of this website.

Changing your cookie preferences

Your cookie preferences:

The "Help" menu in the toolbar of most web browsers will tell you how to change your browser's cookie settings, including how to have the browser notify you when you receive a new cookie, and how to disable cookies altogether.

Cookies that we use:

We use cookies for the following purposes:

(a) authentication - we use cookies to identify you when you visit our website and as you navigate our website. Cookies used for this purpose are: ASP.NET SessionId

(b) status - we use cookies to help us to determine if you are logged into our website. Cookies used for this purpose are: Member Logged In

(c) personalisation - we use cookies to store information about your preferences and to personalise the website for you. Cookies used for this purpose are: DisplayName, IDE,  DSID, _ct_rmm

(d) security - we use cookies as an element of the security measures used to protect user accounts, including preventing fraudulent use of login credentials, and to protect our website and services generally. Cookies used for this purpose are: __cfduid

(e) advertising - we use cookies to help us to display advertisements that will be relevant to you. Cookies used for this purpose are: IDE,  DSID, _ct_rmm

(f) analysis - we use cookies to help us to analyse the use and performance of our website and services. Cookies used for this purpose are: __utma, __utmz

(g) cookie consent - we use cookies [to store your preferences in relation to the use of cookies more generally. Cookies used for this purpose are: __unam

Cookies used by our service providers:

Our service providers use cookies and those cookies may be stored on your computer when you visit our website.

We use Google Analytics to analyse the use of our website. Google Analytics gathers information about website use by means of cookies. The information gathered relating to our website is used to create reports about the use of our website. Google's privacy policy is available at: https://www.google.com/policies/privacy/. The relevant cookies are: utma, __utmz, _ga and _gid, _gat_UA-71504265-2

Our details

This website is owned by ANDO Portugal and website provider by PTisp.

ANDO Portugal is a patient association legally registered in Portugal, under the registration number PA 828/2015 and our registered office is at:

Avenida D. Leonor Fernandes, 46
7005-144 Evora,
Portugal
 
You can contact us:
(a)      [by post, using the postal address [given above]];
(b)      [using our website contact form];
(c)      [by email, using [the email address published on our website from time to time]].

Data protection officer:
Our data protection officer's contact details are: Chief Executive, Inês Alves (same email).

Complaints

If you have a complaint about us, or the treatment of your data, you can contact Comité Navional de Proteção de Dados (CNPD).

Amendments
We may update this policy from time to time by publishing a new version on our website.
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Thank You.