Community Rules

Standards for our Online Communities

The online discussions groups were founded to spread awareness of von Hippel-Lindau disease throughout the world, and to provide support for people with VHL and their families.  All are welcome here – people with VHL, their friends, relations and neighbors, and anyone else who wants to learn about VHL. In order to keep the group a safe and friendly place, we ask everyone to abide by a few groundrules:

Do's

Be nice, be supportive, be respectful
This group works because we support and care for one another. Be nice, and be supportive. Do your best to respect differing points of view.

Take your time and be safe
Please take your time getting started with the group. Remember that your privacy is only as good as your privacy settings in Facebook.  This is an open group, and anyone can join.  If you want to discuss something that requires greater privacy or anonymity, please go to http://vhl.inspire.com where you can create an alias and maintain greater privacy.  If you have any questions, please write to wellness@vhl.org.
We strongly recommend you not post personally identifiable information like your full name, e-mail address or phone number in the group. If you want to exchange this information with someone with whom you feel comfortable, do so in a private message.

Let us know if something is wrong
If you see a member doing something that is contrary to these guidelines or simply feels wrong to you, let us know. If your instinct says something is wrong, it may very well be. We never reveal who reported a problem to us. Every post and member profile has a link to report the item for review by Facebook or Inspire, and you can submit your report anonymously.

Take a deep breath
The Internet makes it easy to forget that we're talking to other human beings, and to misunderstand one another. Email and postings do not carry a tone of voice to let you know whether or not someone is angry or joking. If a member says something that bothers you, take a deep breath and pause before replying. You're replying to another human. They may be having a bad day or may be upset. You may have misunderstood them, or they may not have expressed themselves clearly. You may simply not see eye-to-eye. This group works because we respect one another. It's rare that we need to shut down a discussion, but when we feel that a discussion is generating "more heat than light," we do.

Respect the privacy of others
Please respect the privacy of members.  Do not post personal information about others in this group unless you are a family member or have been directed to do so by the member, or their family. This often comes up when a member is hospitalized or otherwise away from the group for a time. We understand that you want to know how your friend is doing and share that information, but the member's privacy is primary.

Finally, please do not re-post information about a member from another site, or from a private message. The information may not have been intended for a wider audience.  Posting relevant newspaper articles (published information) is encouraged as we all want to learn.

Do not's

For the safety of members and to keep the group running smoothly, we ask you please not to do the following this:

Do not use this group as a substitute for -- or to give -- medical advice
This group is not a substitute for professional medical advice or treatment. Always consult your physician and do not rely on the information in this site when making decisions about your health. The content in this group is for information only and is not reviewed by medical professionals. Similarly, do not use this platform to give medical advice. You may share information about your experiences, but do not play the role of health professional.

No commercial use, promotion or solicitation
VHLFA, as the sponsor of these groups, will promote its programs and events through these channels. You may not use this group for any commercial purpose, marketing, promotion or solicitation. This includes promoting a company, product, service, person, treatment, therapy, Web site, support group, non-profit, charity or fundraiser; recruiting members to participate in market research, clinical studies, or surveys; soliciting donations for charitable causes or for yourself; presenting your resume or using this group to seek employment; and soliciting malpractice clients. Commercial entities are not permitted to join or create profiles in this group. Facebook does post advertising on our group page.  We have no control over the advertising posted by Facebook. 

Do not post inappropriate content
We work hard to keep this group a safe and comfortable place for members. Content that is obscene or violent, refers to material that is obscene or violent, contains hate speech or remarks that are disrespectful to any race, religion, gender, sexual orientation or individual is not permitted. Content that is potentially libelous, violates an individual's privacy, or violates the legal rights of any individual or entity is not permitted. Links to other sites which contain such material are also not permitted. You may not post information which is false or misleading, or misrepresent yourself. A "reasonable person" standard applies and we reserve the right to remove any content or profile that we feel violates this guideline.

Do not interfere with the operation of the group
We reserve the right to remove posts and block access by individuals which interfere with the normal operation and use of the group, at our discretion. Examples include off-topic posting, bumping posts, posts that excessively advance a personal agenda or make it difficult for other members to be heard, creating multiple accounts or aliases, and abusing the friend or private message features.

No copyright infringement
If you find an article or other information online that you think will interest members, post a short description, with an explanation as to why you think it is important and include a link to the original document if possible. That will allow your fellow members to retrieve the source document. Do not post the entire item or significant portions of it. If we think a post violates someone's copyright, we will remove it.

No scraping or data harvesting
You may not scrape, harvest or otherwise collect information in bulk from this list. You may not copy content from this list for another site, or for any other purpose.

Don't use this platform to offer or exchange medication
No part of this group may be used to facilitate the donation, exchange or receipt of medication, as it is against the law to do so. If you are interested in donating unused medication to help those in need, you'll need to determine how the laws of your country and locality govern such donations. In the US, many states have programs through which unused medication can be donated for distribution to those in need. Good starting points for learning about these programs are your state's Web site, your physician, and your pharmacist. You're welcome to share information about such programs here, but you may not use this site to engage in or facilitate the exchange of medication.