Frequently Asked Questions

Please see the following Frequently Asked Questions.

If you still have questions about RareConnect please contact us here.

Written by RareConnect team, published about 1 year ago.

Moderation

How long do moderators spend each week on their tasks?
• Typically moderators spend about 20 minutes a week on RareConnect related tasks. This is subject to change with the number of active moderators and activity level of each community.

How do you decide who gets to be a moderator?
• NORD and EURORDIS member organizations have first priority for moderation privileges. The ultimate goal is to have one moderator from each of the five languages.

What kinds of information can members add to the site?
• Registered members can add content to the Understand and Meet sections of each community. Community managers encourage moderators to forward content for the Learn section.

How do you keep information exchanged on the forum from being potentially harmful or unsafe?
• The Terms and Conditions of RareConnect are stated clearly in our Charter. It is available here: link. Both moderators and community managers patrol the site to counteract any potentially harmful or unsafe information. They have the ability to edit, unpublish, and delete any questionable content.

Starting a Community

How can I start my own rare disease community?
• Communities are built on a first come first serve basis and have to meet certain criteria. If there is a genuine need for a community, access to quality information, and an active patient population then RareConnect may be right for your community. If you feel that your disease community meets our RareConnect criteria we encourage you to contact community managers here.

How do EURORDIS and NORD work together to create a community for a specific disease?
• EURORDIS and NORD work together to develop, manage, and market these disease specific communities. Each organization has supplied one full time staff member and other support staff to run RareConnect. We also rely on the disease specific patient organizations to provide medically sound information, resources, and patient moderators.

How do you decide when to go forward and create a community?
• Once the test site for a disease is approved by the partnering patient organizations we can move forward with launch.

Who partners with EURORDIS and NORD on creating a community?
• We partner directly with established patient organizations to build each disease specific community. If you are a credible organization, with a captive patient population, have access to quality resources, and interested in building a RareConnect community please contact us here.

What if there is a patient group we have concerns with that EURORDIS or NORD is also speaking with?
• All patient organizations are invited to participate in RareConnect. We understand there may be difference between organizations, but in an effort to aid the disease community we ask that everyone play nice.

Role of Patient Organizations

What is the role of a patient organization partners in RareConnect?
• Patient organizations are integral to the success of RareConnect. We rely on patient organizations to help provide disease expertise, patient stories and suggestions for moderators. We also expect patient organizations to help us promote the community through their communication’s channels and with their patients.

What does a patient organization gain from participating in RareConnect?
• Patient organizations are featured prominently on the site and the website links back to their website. We also encourage patient organizations to share information about their programs, services, and events. We see this as another platform to support the work patient organizations are already doing.

Do patient organizations need to contribute anything financial to the project?
• Patient organizations are not financially responsible for any aspect of the project.

Role of Medical Professionals

How does RareConnect currently partner with medical professionals?
• Currently, RareConnect does not consistently include medical professional participation in all of the communities; any formalized participation is community specific. However, we are always open and interested to partnering with medical professionals in a more formalized way within the disease specific community.

I am a medical professional, how can I get involved in a community?
• We encourage the participation of medical professionals on the communities. We are always looking for medical experts to be used as a resource for these rare disease communities. If you are interested in being listed as a resource for patients and families or would like to offer your knowledge by occasionally reviewing patient questions please contact community managers directly here.

Funding

Who funds the RareConnect project?
• Patient organizations and registered users do not have any financial responsibilities associated with RareConnect. Funding for the RareConnect project comes from several sources including patient organizations, public funds, corporate syndicates and pharmaceutical companies. All funding supports the project as a whole and plays an essential part in launching and sustaining all participating rare disease communities.

Is this a long term project of EURORDIS and NORD?
• Yes, this project is a long term project of both EURORDIS and NORD.

Language

What languages is this site offered in?
• The site is currently offered in five languages: German, English, Spanish, French, and Italian.

Who does the translation of stories and forum posts?
• We use a third party application for all of our translations. To ensure quality we use all human translators.

What does on-demand translation of forum posts mean?
• Registered users have the ability to request translations of content in the Meet section.
Safety

How are members kept safe and their personal information kept private?
• RareConnect respects and protects the privacy of people who use the RareConnect website. Information about individual users is not available to any third party without first receiving your permission. We do not collect any unique information about you (such as your name, e-mail address etc), except when you specifically and knowingly provide such information (for example, forum registration or Newsletter subscription). By providing personal details you are consenting to its use. Such personal information will be used to identify you as a unique user, and the information will not be shared with any other entity or organization, unless you have specifically requested us to do so. Your Internet browser has a feature called "cookies" which store small amounts of data on your computer about your visit to our site. Our site does not use cookies to keep track of your movements through the RareConnect, with the exception of the private administration area. This site has 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.

Who is ultimately/legally responsible for the messages posted on the Forum?
• The registered user who posts content on RareConnect is responsible for their own content. All members must comply with the laws of his/her own country, particularly in avoiding the spread of illegal content.

Role of Industry

How can we get a RareConnect community for diseases we have treatments for?
• If there is a genuine need for a community, a captive patient audience, and quality resources we can build a RareConnect community for the specified disease. However, industry cannot sponsor or be the primary developer of any individual community.

What happens to the data and information shared on RareConnect?
• NORD and EURORDIS own all data and information shared on the RareConnect platform.
Are adverse effects reported?
• At some point, patients may report adverse effects through the RareConnect platform. We encourage all RareConnect members to formally report these to the drug manufacturer.

Can we have a presence on RareConnect?
• Anyone can register on the RareConnect platform. However, it is highly encouraged to be fully transparent in your role in the community.

How can we support RareConnect?
• If you are interested in supporting RareConnect financially, please contact us here.

Written by RareConnect team, published about 1 year ago.

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