vhl alliance

The facilitated online and phone discussion groups are provided to you by the VHLA. They are specifically designed to help you feel part of a community of other patients, caregivers, and friends affected by VHL.  These groups are designed to reduce the inevitable feelings of loneliness, isolation, and powerlessness and increase feelings of hope, self-worth, and well-being. Use these platforms for support and education. Bring topics and concerns that matter. The group is here to be supportive as you journey with VHL.

In order to keep each group a safe and friendly place, we ask everyone to abide by a few ground rules. If you have any questions or concerns, please write to the VHL Alliance office (info@vhl.org). Note that both Facebook and Inspire include the ability to report the item for review.


Be safe.  Your privacy is only as good as your privacy settings and information that you post about yourself. Note that vhl.inspire.com allows for anonymity. If you want to share contact information with someone it is strongly suggested that you do so in a private message.

Let us know if something is wrong.  If you see a member saying something that is contrary to these guidelines or simply feels wrong to you, let the VHL Alliance know. If your instinct says something is wrong, it may very well be. We never reveal who reported a problem to us.

Be kind and respectful.  Do not compare suffering. Do not minimize your suffering or the suffering of someone else. Refrain from “at least-ing” other people. (ie: Your mom has a brain tumor? At least your mom didn’t die of kidney cancer.)

Take a deep breath.  Misunderstandings can happen during phone discussions and even more commonly in a social media post. Trust that everyone is doing our best with their own unique challenges. Do not judge yourself or others. You may feel an emotional response to the way someone is handling a situation or to the treatment someone has chosen.  Sometimes taking a deep breath before responding is important. If appropriate, inquire further about their course of action in order to better understand and empathize with them.

Respect the privacy of others.   Do not discuss personal information about others unless you have explicit permission from that person to do so. This includes refraining from re-posting or otherwise talking about information that a person shared on another site or in a private message. Only your experience is yours to share, please do not share anyone else’s experience.

Do Not

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

Do not use these platforms to offer or exchange medication. No part of these groups 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 will need to determine how the laws of your country and locality govern such donations.

No commercial use, promotion or solicitation. You may not use these groups for any commercial purpose, marketing, promotion or solicitation. This includes promoting a company, product, service, person, treatment, therapy, website, support group, non-profit, charity or fundraiser outside VHLA; recruiting members to participate in market research, clinical studies, or surveys; soliciting donations for charitable causes or for yourself or organizations other than VHLA; presenting your resume or using this group to seek employment; or soliciting malpractice clients. Commercial entities are not permitted to join or create profiles in this group.

Do not use these groups as a political or religious platform. These groups are designed for support and education. Differences in political and religious views can deter from a community of support. Please be aware of the fine line between expressing one’s opinion and promoting one’s political and/or religious beliefs.

Do not talk about or post inappropriate content. Content that is inappropriate, hostile towards others, or refers to material that is obscene or violent, vulgar language, contains hate speech or remarks that are disrespectful to any race, religion, gender, sexual orientation or individual is not allowed. 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. Do not post information which is false or misleading. VHLA reserves the right to remove any content or group member who violates these guidelines.

Additional Standards for Online Communities

Do not interfere with the operation of the group. VHLA reserves the right to remove posts and block access by individuals which interfere with the normal operation and use of the group. 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. Copyright laws must be obeyed. 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. Do not post the entire item or significant portions of it. Posts that violate copyright laws will be removed.

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.

Additional Standards for Phone Discussions

    1. Please say your name before you speak so we can connect as a group more effectively.
    1. Try to be on time for the call.
    Mute your phone when not speaking to minimize background noise on the call.