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Moderators Manual

A joint project of

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Welcome Dear RareConnect Moderator,

On this guide you will find:

Thanks for joining us. This guide was established to aid you in your role as a moderator. We want to make sure you have all the tools to effectively use this platform.

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Overview of RareConnect

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What is a Moderator?

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Responsibilities of a Moderator

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Do’s and Don’ts of Moderation

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Tutorial of the Site

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FAQ of RareConnect

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Moderator Case Studies

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Stimulating Activity in the Com munity

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How to Promote the Community

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On-Going Support

We want to support you as much as we can. You play a critical role in the success of these communities and your contributions do not go unnoticed. Feel free to use this platform to highlight the accomplishments of your organization. If at any point you have any questions, comments, or concerns please do not hesitate to contact us by email or phone. We can also always set up a conference call to discuss your community with you and the other partners.

Your RareConnect Community Managers, Rob Pleticha robert.pleticha@eurordis.org +34.663.092.790 Marta Campabadal marta.campabadal@eurordis.org +34.663.092.790 Allie Freitas afreitas@rarediseases.org +1.203.744.0100 x226

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Overview of RareConnect Living with a rare disease can be an isolating experience. RareConnect was created by European Rare Disease Organization (EURORDIS) and National Organization for Rare Disorders (NORD) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.

Benefits of Joining

• • • • •

Connect with others who understand Learn about research and the latest treatments Share your own experiences See what advocacy organizations are doing around the world Find helpful resources and information from experts

The site is divided into three major sections, which together provide a comprehensive support system for an individual patient or caregiver.

Understand Learn what it’s like to live with a rare disease or share your own story. Browse patient testimonies, share photos, and contact patient organizations. The “Understand” section of RareConnect promotes awareness and understanding through daily life experiences.

Meet Start your global conversation here. Connect with others around the world to share support and encouragement. The “Meet” section of RareConnect provides a safe place to meet friends, ask questions, start or join conversations, and interact with others experiencing the same challenges.

Learn Find quality information from trusted sources. Read publications from medical experts and patient organizations. The “Learn” section of RareConnect links to FAQs, published articles, upcoming events, and other documents providing the latest information for each disease-specific community.

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What is a Moderator? Why are you a moderator? • Ensure that quality information is shared with patients and families. • Promote your patient group and refer members to the appropriate national patient group when available. • Act as a support resource to patients and families. Newly diagnosed patients and families rely on the expertise of others who have “been through” some of the same events.

What is a Moderator? An advocate who has a need to safely share information, knowledge, experiences, good practices, documents, everyday topics and themes.

A person given special access to: • be the leader (set the tone, decide on forum moderation mode) • be the responder and editor of a group (keep members focused, moderate posts, organize forum) • raise awareness (send emails, invite new members, promote activity in community)

Mission of moderators. The RareConnect project uses volunteer moderators from patient groups to ensure quality information is exchanged on the forum and a safe, supportive environment is created for all members to feel comfortable when communicating.

There will be more than one moderator for each Community.

This means: • You can share the responsibility of moderating the group with a peer or with someone who has special knowledge of the subject. • You don´t have to be an expert in all areas of the disease. Maybe you just know the right websites and people to find the information other members are searching for. • The different languages of the platform have a moderator dedicated to ensuring posts in their native language are translated properly.

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The role of a moderator is to: • Be a leader who helps others to help themselves through safe methods. • React appropriately to new stories, comments, or forum posts upon receiving an email notification (more on this later). • Keep their patient group informed on progress and activity on the community while keeping the RareConnect team updated on the patient group’s activities. • Suggest new content (articles, stories, videos) to the RareConnect team. • Update the community on their activities by posting Stories. • Send a welcome message through a private message to new members identifying yourself and your patient group. • Encourage contributions from other members. A single contribution alone isn’t enough. You need to keep members active for 3 to 6 months. Only a high level of contributions over a sustained period of time will ensure they become regular members of your community.

One forum moderator’s outlook

People with a new diagnosis are the real reason I keep coming back. As important as my established relationships are to me, I feel that I have the greatest opportunity to make an impact on someone’s life with those who are looking for information. That’s my strength, more than casual banter or an emotional boost, which so many other members shine at. - Linnea Duff, blogger, rare cancer patient

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Responsibilities of a Moderator Here is how being a moderator will work: • All of the moderators are set to get an e-mail when ANY new post in ANY language is posted in the community. • You will see the actual post in the e-mail that you get. • If you read the post in the e-mail, and want to respond to it, correct it, or delete it, you need to enter the website and log in. A direct link is provided in each e-mail notification. Click on this link after logging in.

Moderators have the ability to: • Edit, delete, publish or un-publish a post on the forum when logged in as a moderator. • Edit, delete, publish, or un-publish a story/testimonial that is added through someone’s profile. • Point out any questionable posts to community managers or other moderators for discussion or possible removal. • Send a message to a newly joined member welcoming them to the site and informing about patient organization. Only moderators have the ability to send a private message without first being “friends” with the member.

Questionable Posts: If you are unsure if a post is appropriate for RareConnect, please: 1. Check the Online Communities Charter to see if the post violates the Terms of Use. If the post clearly does, then un-publish. 2. If you are unsure if the post violates the Terms of Use, please email the post to the RareConnect Team or the other Moderators for discussion.

Please do not forget: • To notify the RareConnect team if you will not have access to email for extended period of time. • Ask questions about security, share concerns you might have, and report any incidents to the RareConnect team. • Discuss with other moderators when difficult situations/discussions arise (grey areas).

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Do’s and Don’ts Do’s Disclose your membership in the group and connection to the subject. Example: “I’m Susan and I am a patient with X disease who has volunteered with the X Association for 4 years.” Use disclaimers. Example: “The postings on this site are my own and don’t necessarily represent positions, strategies or opinions of my patient group whose representative I am.” Be transparent and cite sources. Share what treatments or strategies worked for you. Be accurate. Be considerate and use language that helps nurture a friendly atmosphere that allows for peer support. Ask for feedback from the group. Don’t take it personally, but as an opportunity to improve your Community and its ability to serve members’ needs. Respect copyright laws; don’t post text of copyright articles you don’t have permission to share. Short quotations do not violate copyright law and are allowed. Update the community about articles you have read online and why it is of interest to others. Communicate about an event with supporters—prior to it, during the event itself, or as a means of following up with participants after. If you reside in the United States, please report suspected adverse drug reactions you experience here: http://www.fda.gov, (search Adverse Event Reporting System). If you reside in the European Union, the reporting of side effects is normally carried out by healthcare professionals, and you are therefore recommended to speak with a healthcare professional. Increasingly, patients are able to report suspected side effects directly through various methods such as online patient reporting forms hosted by national medicines regulatory authorities or by telephone. Consult the appropriate authority from the list of national medicines regulatory authorities in the EEA for information on how to report a side effect. Use extreme care when communicating with minors. Ask questions of other moderators via the mailing list moderators@rareconnect.org or RareConnect staff via email.

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Don’ts Don’t reveal private information in a public space. You should consider carefully how much detailed personal medical information linked to your name you want published on the Internet. Don’t try to replace the advice of a doctor, for very specific questions, remind people that the best person to answer is their doctor. Don’t criticize or talk down to anyone. Keep the space and members equal. Don’t diagnose other members. Don’t recommend treatments. Don’t ask other members to endorse a product they have not used personally or create any other form of false endorsement. Don’t post advertisements or solicitations of business. Don’t post chain letters, pyramid schemes, or on subjects that are “off topic.” Don’t take it personally if someone is acting offensive towards you in the group.

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Helping you (and members) to use RareConnect As a moderator, members of your patient group may have questions about using the website. Here are guidelines that help you to support them. How to choose a username?

• We recommend people do not use their full names for privacy protection • Can be your first name only or a pseudonym • Can include patient group name or abbreviation - example MikeAPWR

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Helping you to use RareConnect (continued) How to choose a username?

1. First Register at: http://www.rareconnect.org/en/register 2. Click on Profile in the upper right hand corner of your Community

3. Click on Edit, you should see the following screen

When editing, don’t forget the “Introduce yourself” section, where you can identify yourself as a moderator and/or member of a patient group

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Frequently Asked Questions Role of a Moderator when representing a Patient Organization How long do moderators spend each week on their tasks? This depends on many factors including: the number of active moderators, the time since the community has been launched, the number of members in the community, and if there is high participation regarding a certain topic. It can range from a few minutes per week to a few hours. If you can no longer fulfill your moderator duties, please contact a member of the RareConnect team. How do you decide who gets to be a moderator? Patient organizations nominate moderators for specific communities. 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. Both moderators and community managers patrol the site to counteract any potentially harmful or unsafe information. They have the ability to edit, un-publish, and delete any questionable content.

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, ongoing content updates, and nominations for moderators. We also expect patient organizations to help us promote the community through their communication’s channels and with their members. What does a patient organization gain from participating in RareConnect? Patient organizations are featured prominently on RareConnect through 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.

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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 RareConnect community managers directly.

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. To view the current funders, please visit the funding page. For more information on relationships with funders, please see the EURORDIS Policy on Financial Support by Commercial Companies. Is this a long term project of EURORDIS and NORD? Yes, this project is a long term initiative 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. What languages will be added to RareConnect in the future? In the near future we are looking to adding Portuguese as a sixth language. 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.

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Safety How are members kept safe and their personal information kept private? RareConnect respects and protects the privacy of people who use the Rare Disease Communities website. To that goal the platform complies with European legislative norms surrounding Data Protection and is registered with the French Data Protection Agency (CNiL). Certain personal details are collected at registration (e.g. email address) with the option of providing addition identifying information (e.g. name, gender, location). 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. This site has security measures in place to protect the loss, misuse and alteration of the information under our control. 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.

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Case Studies Moderation has a lot of “gray” areas Not all posts are black and white. A moderator’s primary role is to exercise judgment, offer referrals, answer questions, and keep the conversation going on appropriate topics. Read through these scenarios and think about how you would act as a moderator.

Scenario 1 People ask all kinds of questions on forums. This one is about some symptoms the member has been experiencing.

What the moderator did: Within only a few minutes, this moderator pointed out that the symptoms were serious enough to be an issue to discuss with a doctor. If the moderator had not intervened, well-meaning people could have given potential dangerous advice. You should never let people try to diagnose each other online or discuss life threatening questions. Those discussions are for the doctor’s office.

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Scenario 2 These forums are a safe space for patients, caregivers, and family members to discuss living with a rare disease. Sometimes people who don’t belong want to get in touch with these groups.

What the moderator did: This post clearly violated the Charter for Online Communities under the section. So, the moderator logged in, up-published the post, and notified the RareConnect team for further action on the situation.

Any form of advertising is not allowed in the messages, not only for treatment but also for clinical trials, doctors, or care facilities.

Scenario 3 Even well-meaning people make huge mistakes in recommending treatments to others. A treatment for a particular disease that may work for one patient may not work for another.

What the moderator did: Recommending treatments also violates the Charter for Online Communities. Sharing a recipe for a low protein meal is one thing that is alright to share. Encouraging others to investigate treatments in “miracle� clinics is not acceptable and should be deleted or unpublished immediately.

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Scenario 4 A community can feel like a safe place full of similar people facing the same challenges. We find that most people are legitimate and do the best they can for their families every day.

What the moderator did: Responded to the post by telling people not to directly send money. The best thing to do in this situation might be to contact the manufacturer of the product and see if they have an emergency access plan in place for patients. You can also contact NORD and EURORDIS to see if we may have some in-country contacts. While no one wants to ignore a cry for help, direct solicitations of money must be removed and responded to.

Scenario 5 You may think you know another group member.

What the moderator did: If you ever suspect that someone is not who they say they are, please notify the RareConnect team. Our goal is to create a safe space for patients and caregivers, but we cannot always verify an individual’s identity. The example above is an extreme example of patient exploitation. In that case, the moderator went on a Twitter campaign and publically called out the company for its employees’ behavior. The person was banned from the group.

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Stimulating Activity in the Community Email other moderators to ask for their ideas and thoughts, create a plan together. Look at your patient group’s website or newsletter for new content ideas that can be shared and translated on your RareConnect community. Add videos, pictures, etc. to increase discussion. Share scientific articles, new information, and links to clinical trials. Find a goal for the community that can use the community’s strengths and knowledge towards that goal. For example, a rare disease patient group for Marshall Smith Syndrome developed a wiki tool on their online community (not RareConnect platform) that allowed parents to contribute their experiences on certain topics. A researcher was able to assemble that parent knowledge and create a scientific article based on the parent’s knowledge. Set up a Question and Answer session with a well-known researcher or expert in the disease. You can solicit questions beforehand from members and ask top bloggers/influencers if they have any questions for the individual – which in turn might gain you coverage on their platforms. Your target audience has to join to ask a question (and visit to see the response). Organize a webinar with RareConnect and a medical professional. We have a webinar tool to use in these situations to record the webinar for later posting on the community. Recruit new members: invite a few people a day who are already online and discussing or writing about the same disease. You might find these on Twitter, comments on blogs/news stories/Facebook etc...You can ask them to share their opinion on the issue and send them the link to do so. Tap into knowledge that you know members have and trying to draw that out into a conversation. Example: hi - hoping all are well! - any thoughts/opinions on Colchicine and Anaemia.

Avoid rude provocations and accusations for increasing discussion.

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How to Promote the Community Continual and consistent promotion of your RareConnect community is critical to member participation. When promoting this platform highlight the benefits of our communities. Websites, social media channels, and e-newsletters are a great way to promote online communities. The RareConnect team highly encourages all organizations involved in the project to announce the launch of each community as well as new content through their own resources. As a participating organization you should have permanent link on your websites to RareConnect. We have created a badge, or logo, in each language as a way to include the link.

Download all the badges Also, consider mentioning RareConnect on any future communications your organization creates (ie. newsletters, conferences, or e-mails). Effective use of social media is critical to RareConnect marketing. We encourage you and your organization to make frequent posts on your own social media channels and others that relate to your disease. Direct links drive traffic back to the community and remind people that there is a place to ask questions to an international audience. Annual conferences/meetings are great place to highlight your work with RareConnect. Community managers are available to attend and present the community

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Moderator Support Tools Daily support Moderators play an important role in the communities, but you are certainly not alone. You can always contact Rob at EURORDIS and Allie at NORD for support by email or phone. Rob Pleticha robert.pleticha@eurordis.org +34.663.092.790

Marta Campabadal marta.campabadal@eurordis.org +34.663.092.790

Allie Freitas afreitas@rarediseases.org +1.203.744.0100 x226

Moderator email group There is a mailing list: moderators@rareconnect.org for moderators to discuss situations that arise and offer mutual support to each other. Any moderator can email a question to the group. Occasionally, Rob and Allie will also use this mailing list to send community wide updates and other helpful hints to moderation.

Regular webinars Active moderators are invited to regular webinars. The goal for these webinars is to increase the skills and the knowledge of moderators to use the web as an effective tool for rare disease community building. So far webinar topics have included: including social media in your communications strategy, involving experts in online patient communities, and defining the rules for online conversations. In the future the webinars will be stored online for on-demand viewing.

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RareConnect Moderator Manual  

This guide was established to aid you in your role as a moderator. We want to make sure you have all the tools to effectively use this platf...

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