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Changes to our Online Discussion Group
Frequently Asked Questions - FAQ
Q: Who is Inspire?
A: Inspire is ClinicaHealth. The VHLFA partnered with ClinicaHealth (now Inspire) to host the online community in December, 2006. Inspire hosts online communities for more than 40 different patient advocacy/health organizations. The company’s only focus is building and managing online health communities. Inspire provides the software which powers the VHLFA community, moderates the community, and provides help desk support for the community. They can be reached at www.inspire.com/help, (or click on "Help" at the bottom of any page in Inspire) or you can send an e-mail to team@inspire.com. They will respond back to you, usually within 24 hours.
Q: I can’t find the new website – where is it?
A: The website is at http://vhl.inspire.com. If you have bookmarked the old address (vhl.clinicahealth.com), that should continue to work as well. The site is also linked from www.vhl.org, so if you forget, you can always find us there.
Q: Why did you make the change from the old website to the new website?
A: Inspire is always adding new features to the website in an effort to respond to feedback they get from members like you. That said, the changes that were made in March, 2008, were more significant than most. The big change here was that Inspire brought all of the groups it supports together under one umbrella – so, for example, the people who are part of the VHL group can talk to the people who are part of the National Organization for Rare Disorders (NORD) group (if they want to). This idea comes from the thought that we all have multiple health relationships in our lives. We may suffer from headaches, care for a loved one with VHL and be the parent of a preemie. With Inspire, you can participate in a group for each with one password.
Q: Why are we now part of a larger site with people who don’t have VHL?
A: This was a feature that many members of our group – and other Inspire groups - requested. For example, people with VHL who were thinking about issues involved with genetic testing wanted to be able to get feedback both from people who have VHL, and from people who have other genetic diseases.
Q: I don’t want to be a part of a community with people who don’t have VHL.
A: You don’t have to be, if you don’t want to be. You can go to vhl.inspire.com – everything you see in that group is focused on VHL, and only VHL. You can post messages that appear only in the VHL group, respond to messages only in the VHL group, and make friendships only with people who are in the VHL group – if that is your preference. At any time, you can click “My Groups” at the top of the page to review the groups you are in and remove yourself from any you do not wish to be a member of.
Q: Is my privacy still protected in this new site?
A: Yes. Read the privacy policy by clicking on "Privacy" at the bottom of any page (or go to http://www.inspire.com/about/privacy/). This policy has not changed in any significant way over the past two years. Your address and personal details can be kept as private as you wish. You can choose to share selected bits of information with other members. We recommend that you NOT make any of your personal information "public".
Please do not put your personal details into the messages you post in the discussions on the community. The content of the messages can be seen by non-members as well as members. To make direct contact with another member of the group, send them an invitation to become a "friend". Once you have done this, and the other person has become your "friend," you can send direct messages to one another within the system, without knowing each other's e-mail addresses.
Q: I liked the old website better.
A: Change is sometimes jarring and frustrating but we want you to know we are listening. We’d like to know more, and appreciate your feedback. Please tell the Inspire team what you liked about the old site, and let them know what features you’d like to see on the new site. They are working to make the site as good as it can be. You can submit feedback by clicking on "Feedback" at the bottom of any page. Include your e-mail address if you want to get a response, or submit your feedback anonymously if you want. Alternatively, you can send a message to team@inspire.com.
Q: I’m lost. What’s changed?
A: The biggest change is that our VHL group is now a part of a larger community of condition-specific groups, and that members of all of these groups can talk to one another (if they want to do so). There have been some cosmetic changes as well, and in some cases we’re still working through a few bugs with the software. In every case, we’re always trying to make things better and improve the experience you have on the site.
Q: I’m not getting my daily e-mails.
A: Under the old system, daily e-mails came from vhl@clinicahealth.com and had the tile/subject line “Daily Newsletter – The VHL Community.” Under the new system, daily e-mails come from subscriptions@inspire.com and have the title/subject line “New today from the VHL Family Alliance Support Community and more.”
Please look through your bulk mail folder as your e-mails may be landing there. All of the mail from our group will now be sent from either team@inspire.com or subscriptions@inspire.com, so you’ll want to be sure you have put both those addresses on your allowed senders list.
Q: The subject line of my e-mails is “New today from NORD and more” (or something else that doesn’t mention the VHL Family Alliance Support Community”). What gives?
A: Whichever group you join first shows up in the title of your e-mail, and the activity of all the groups you have joined shows up in the e-mail in alphabetical order by group.
Q: Why am I getting information sent from groups that have nothing to do with VHL?
A: That shouldn’t happen – you may have joined another group (other than the VHL Family Alliance) by mistake. Click "My Groups" at the top of the vhl.inspire.com page, and then click "remove" to leave any group you do not wish to be a part of.
Q: I was already a member of the old site. What do I have to do to become a member of the new site?
A: Nothing. Your user ID and password will work on the new site, and all of the content on the old site is available on the new one.
Q: I wasn’t a member of the old site. Why should I join this site?
A: We hope that you’ll find the VHL community is a place where you can share with and support others who are dealing with VHL and related conditions. More general information about the site is available at http://www.inspire.com/about/faq/.
Q: What do I have to do to join?
A: To get started, go to http://vhl.inspire.com. This will take you directly to the VHL group. Click “Join” (on the navigation bar, just to the left of the search box) and you will be taken to a screen where you can join Inspire (click on the words “join here” after the words “New User?”) and be automatically added to the VHL group. You will need to confirm your e-mail address by replying to an e-mail before you can log in and participate.
If you do not receive your confirmation code, please make sure to check your “bulk” or “spam” folder. Once you receive it follow the instructions contained therein to activate your account.
Q: Why do I have to join Inspire to join the VHL group?
A: Inspire hosts the VHL group along with support groups for more than 40 other patient advocacy organizations. There is no cost to join Inspire, of course – and once you join, you can participate in as many or as few of these groups as you like. Our parent organization, NORD (The National Organization for Rare Disorders) is a member of Inspire, as are other groups that you may find interesting or helpful.
Q: How do I search for information on the site?
A: There is a search box on the front page of vhl.inspire.com. If you search via that search box, it will search only the VHL group, not other groups on Inspire.
Q: How can I see what’s new on the site?
A: Via the daily newsletter (which tells you everything that’s happened on the site within the last 24 hours) or by going to vhl.inspire.com. Then click "New." Under "New" you'll see:
- All = all journals and discussions posted recently
- Active = journals and discussions in order of the most recent comment to them
- Discussions = just discussions listed newest to oldest
- Journals = just journals listed newest to oldest
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Members = Members listed from most recent join
Q: How do I invite my friends to join the VHL group?
A: To invite friends and family members to join the group, click “Inspire Others” in the “you” menu or just enter their e-mail address here: https://www.inspire.com/friends.pl?op=inspire-others.
Q: How do I find friends who have VHL?
A: At the top of your group page is a button that says "members". When you click this button a search page comes up that lets you type in keywords, sex, zip code and other limiting factors to a search of other group members. If you see someone you would like to be friends with, click on their picture. At the top of the page that comes up you will see a button that says "add me as a friend". Click this to send the member a friend request message.
Q: Why do I have to be friends with someone to send a message?
A: We believe you should have control over who can contact you. Moderators and team leaders can contact you via the site regardless of friend status; however, you must accept a friend request from a member for them to be allowed to send you a private message.
Q: Why would I want private messages?
A: You may want to communicate with another member about a matter privately but anonymously. Messages allow you to talk to someone one-on-one without sharing your email address.
Q: How do I update my profile?
A: When you click on 'About Me', you'll have the opportunity to enter information about yourself, and choose what to share with friends. You can also upload pictures of yourself by clicking “change” next to the place for your photo. Remember that the more you share about yourself, the more likely you are to meet others.
Please be sure to review our community rules, enjoy the VHL community, and participate often. We welcome your ideas. If you ever have thoughts to share or questions about this Community, please see our FAQ page, Help page, or e-mail team@inspire.com
Q: I forgot my password.
A: You should always be able to log in to the site with your e-mail address and the password you provided when you registered. You can request a new password by going to https://www.inspire.com/forgot-password.pl
Q: How do I get help with this site?
A: If you would like general information regarding how the site operates, go to http://www.inspire.com/about/faq/. If you don’t find the information you are looking for, you can file a help request at the site (https://www.inspire.com/help/) or send a message to team@inspire.com. Inspire makes every effort to respond to all questions within 24 hours.
Q: I want to tell you what I think about the new site and/or suggest new features or changes. Who do I talk to?
A: Inspire appreciates your thoughts and comments. You can submit them by clicking "Feedback" at the bottom of any page. Include your e-mail address if you want to get a response, or submit your feedback anonymously if you would prefer. Alternatively, you can send a message to team@inspire.com.
Q: I don’t want to talk to Inspire. I want to talk to someone at the VHLFA.
A: If you have a question or comment about the online community, please reach out to the team at Inspire first. They keep us at VHLFA up to date with the comments and questions they receive. We’re working with Inspire to host our online community so that we at VHLFA can stay focused on all the other things that we do for patients, families, and to advance research in the field.
However, if you aren’t getting the support you need, of course, please contact Joyce or Gale any time.
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