- Who We Are
- What is HIE?
- For Parents
- For Clinicians & Partners
- Get Involved
Hope for HIE has a strict non-solicitation policy as a nonprofit organization, and especially in regards to our closed support forums.
Hope for HIE’s forums exist first and foremost to be a community for parents to network and connect with others whom they can share information regarding the common diagnosis of HIE. The advice, suggestions and resources we all share with one another is paramount to our collective membership and organizational purpose.
NON-SOLICITATION POLICY PHILOSOPHY
With the evolution of social media, and the explosion of predatory business practices, many companies encourage the use and abuse of social networking to build business – both on and offline. These tactics include sending or requesting personal messages promoting the products or services one represents to members, attempting to recruit others to sell products, in-person pressuring of sales or services, and vague messages to entice members to message a person to learn more, where they receive a sales pitch.
Hope for HIE finds this to be a grave conflict of interest and it has the potential to possibly exploit those who are emotionally fragile and going through a traumatic time. All Hope for HIE outlets, including the website, online sub-groups and offline local support groups, operate under the Hope for HIE Community Standards & Guidelines.
If a community member is found in violation of this policy, depending on the severity and nature, they will be given a warning, or may be removed from the group or other Hope for HIE channels permanently.
We do not allow solicitation of our membership without the expressed written permission granted by the Hope for HIE Board of Directors through any Hope for HIE outreach channel such as our social media forums, websites, in person Hope for HIE-affiliated gatherings, etc.
Solicitation includes, but is not limited to:
PARTNERING, SPONSORSHIP & COMMUNITY COLLABORATION PROCESS
Hope for HIE regularly partners and promotes applicable and coordinated interests through our communication channels, and is happy to review proposals for such coordinated efforts. All proposals and “asks” are to be coordinated by emailing email@example.com for Board review and approval. Please do not reach out to individual administrators or Board of Directors members.
The only exception is in the MEMBER MARKETPLACE sub-group, which can be used for products, and of a buy/sell/trade nature.
The MEMBER MARKETPLACE group was created to be inclusive, but not intrusive of others and serves as a place where some applicable business ventures, direct selling/MLM posts are welcomed.
All outlets point people to the MEMBER MARKETPLACE group, should they wish to utilize that space for promotion of the products they are selling for financial gain, no matter the use of the funds. Hope for HIE cannot be responsible for bad exchanges between members, and therefore we encourage you to proceed with any transactions with caution.
POSTING PERSONAL FUNDRAISERS, SUPPORT PAGES, ETC.
We recognize the need for members to share fundraisers they are participating in, contests their children are in, personal support pages, etc. These items can be mentioned once a week in our WEEKLY MENTIONS thread that is posted every Monday. Personal support pages can be shared in the applicable document in the FILES section.
QUESTIONS OR REPORTING VIOLATIONS
Should you have any questions about this policy, are a victim of predatory business practices in our network, or would like to report someone who is violating these policies, please contact the public foundation Facebook page to ensure all administrators receive it, or email firstname.lastname@example.org
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.