Osteogenesis Imperfecta Federation Europe (OIFE) collects personally identifying information about various target groups for our contact lists. We do so in order to reach our goals, which includes networking and exchange of news and information between individuals, professionals, organizations and other stakeholders.

OIFE does not trade, share or sell personal information with anyone outside the OIFE without your consent.

The OIFE seeks to maintain accurate information regarding individuals in our lists. Individuals may update their personal data by contacting the OIFE at office@oife.org.

How we store your personal data?

OIFE’s administration is based in several different countries. Because we need to access data from different locations, we store our lists containing personal data in Google Drive. The lists containing personal data are stored in a password protected folder, separated from OIFE’s other files which are also stored in Google Drive. A limited number of people from OIFE’s administration have access to the folder containing personal data.

OIFE’s Secretary (based in Germany) serves as our lead data protection supervisory authority.

What kind of lists we have containing personal data:

OIFE delegates & volunteers

What kind of data we store:

  • Name
  • E-mail
  • Phone number
  • SkypeID

Purpose of the data: Administration of the OIFE
Who can access the data: OIFE’s administration & Social Network Coordinator
Note: Contact lists for delegates & volunteers might be shared with delegates & volunteers within OIFE on a need to know basis.

Contact persons of OI-groups & volunteers outside OIFE

What kind of data we store:

  • Name
  • E-mail
  • Phone number
  • SkypeID

Purpose of the data: Administration of the OIFE
Who can access the data: OIFE’s administration & Social Network Coordinator
Note: Contact lists for volunteers might be shared with delegates & volunteers within OIFE on a need to know basis.

Subscribers to OIFE Magazine

What kind of data we store

  • If you are a professional or not (Yes / No)
  • Name
  • E-mail

Purpose of the data: Distribution of OIFE Magazine via e-mail.
Who can access the data: OIFE’s administration.
Note: When an individual contacts the OIFE by e-mail, we ask for consent from the person to be included in our list of subscribers of the OIFE Magazine.

Professionals who work with OI

What kind of data we store

  • Name
  • E-mail
  • Workplace
  • Work address (address, city, zip code, country)
  • Department
  • Specialty
  • Phone

Source of the data:

  • Subscription to OIFE Magazine
  • Personal contact via e-mail with OIFE office
  • Participation in conferences hosted by OIFE or one of our partners

The purposes of the database

  • Administration of OIFE’s Medical Advisory Board
  • Distribution of OIFE Magazine
  • Distribution of invitation to conferences & information about grants
  • Tool for OIFE’s Social Network Coordinator in assisting individuals in finding local support & doctors with experience in OI

Access to data: OIFE Administration & OIFE Social Network Coordinator
Note: When a professional contacts the OIFE by e-mail, we ask for consent from the person to be included in our list of subscribers of the OIFE Magazine.

Donors

What kind of data we store

  • Name
  • Contact information
  • Payment information once the transaction is complete (needed for our financial reports).

Purpose of the database:

  • Financial reports
  • Distribution of OIFE Magazine

Access to data: OIFE Administration
Note: When a person donates money to the OIFE, we ask for consent from the person to be included in our list of subscribers of the OIFE Magazine.

Corporate Partners

  • Name
  • E-mail
  • Workplace
  • Phone

Source of the data:

  • Subscription to OIFE Magazine
  • Personal contact via e-mail with OIFE office
  • Participation in conferences hosted by OIFE or one of our partners

The purposes of the database

  • Distribution of OIFE Magazine
  • Contact regarding research and development
  • Fundraisings purposes
  • Tool for the Medical Advisory Board

Access to data: OIFE president, OIFE secretary and OIFE Treasurer
Note: When a corporate representative contacts the OIFE by e-mail, we ask for consent from the person to be included in our list of subscribers of the OIFE Magazine.

Right to be deleted

Unless we need your data for our financial reports (which we are obliged to store a number of years), you have the right to ask to have your name and contact information deleted from all our lists. Individuals may ask for their information to be deleted from our contact lists by contacting the OIFE at office@oife.org.

Unless you specifically ask us to do so, we will NOT delete you from historical participant lists or other files which are no longer in use for distribution of news/information.

OIFE event

When OIFE host events, we produce participant lists with information we need to host the event. Access is depending on who’s in charge of the event. After the event, the participant lists are moved from the various project folders to the folder containing personal data.

When hosting events, we ask for permission in the registration forms regarding photos and videos – for later use in OIFE Magazine, webpage, social media or written publications.

Visitors to our webpage

Unless you have do-not-track enabled in your browser, we collect anonymous, non-identifiable information about visitors such as operating system and web browser type/version as well as the time and date of your visit on a particular page. The information automatically recorded by our server is used only for statistical purposes so that we can manage our site better and serve our visitors. All information provided by users is transmitted using SSL (Secure Socket Layer) encryption. Our site uses cookies to uniquely identify users’ machines so that we can monitor site usage, traffic and trends.

More information about privacy?

Should a user require additional information regarding the OI Foundation’s privacy policies or practices, or how information is collected and used on the site, please contact OIFE by e-mail at office@oife.org or the address listed below:

Osteogenesis Imperfecta Federation Europe
c/o Ingunn Westerheim
Etterstadkroken 5D
0659 Oslo
Norway