Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

Community Standards & Guidelines

Welcome to Hope for HIE! 

Whether you have a newly diagnosed child, or are finding our comprehensive support network for the first time in your journey, we want to welcome you to a place where there is hope in each story, no matter what outcome you may be facing.

Hope for HIE History

The Hope for HIE Foundation is a US-based 501(c)3 non-profit organization serving families worldwide. What began in 2010 as a forum focused on connecting parents, became a nonprofit foundation in 2014, reaching and supporting thousands of families a year. Today, the foundation has significantly grown to the premiere global patient advocacy and support organization for neonatal and pediatric-acquired HIE helping clinicians to improve understanding and familial relationships, support research, and the ultimate goals of decreasing incidence and impact of HIE, and increasing opportunities for children with HIE to reach their individual potentials.

Hope for HIE Support Network & Culture

Being a part of any community has its own culture and norms. Since our inception, we continue to evolve as the world does, especially in advocacy, and in the understanding of HIE’s long term outcomes and the vast variety.

Hope for HIE hosts over 100 peer support groups on Facebook that are topic and location-based, with our Parent Support Hub  connecting parents and caregivers of HIE children. These groups are administered by a team of over 75 moderators and administrators who work cohesively to build and maintain levels of support aligned with Hope for HIE’s Community Standards & Guidelines to establish clear boundaries.

A comprehensive list of our subgroups can be found at Facebook.com/hopeforhie/groups.


The Hope for HIE culture centers around the experience of connecting with others and revolves around certain core values:

  • Advocacy – We will actively advocate for our children and fellow families. We will relentlessly pursue a world where HIE families can fully realize their potential. ​
  • Empathy – All families and children who experience HIE deserve empathy for the path they are on, no matter the outcome. ​
  • Integrity – We will be who we say we are, work together honestly and direct ourselves toward building the organization for the greater good. ​
  • Unity – We will be open and honest with each other. We realize we are stronger together and group needs are stronger than individual agendas. ​
  • Reflection – We will carefully analyze all decisions that are made and adjust the scope or expectations in order to best benefit the HIE community at large.

We come together sharing that HOPE is found in the journey with HIE, and work to connect across all outcomes.

Membership & Accountability

Our experience building community began in 2010. We work to balance the diversity of our membership, including the causes, outcomes and backgrounds of each HIE child’s situation, and have grown a culture that strives to be inclusive, helpful, and educational. Membership in Hope for HIE’s community is a two-way relationship. We expect members to read, understand, and adhere to our Community Standards & Guidelines, and we expect our admin and moderator team to uphold the Community Standards & Guidelines.

Hope for HIE’s support is geared first and foremost to parents of children who have been diagnosed with HIE, regardless of severity or outcome. Extended family is welcome to join our subgroup specifically to connect and support extended family members. 

Please note: Facebook profiles on behalf of a child will not be added in – parents profiles must request. We work hard to ensure this is a safe place for all, and child profiles violate Facebook’s Terms of Service.

Reaching the Admin & Moderation Team

With the many tools and algorithm changes social media goes through, sometimes posts and comments may get flagged either by Facebook or our admin automatically, or get reported and put into a review queue. We review any posts or comments that get flagged daily, and if they do not violate the community guidelines, we are able to restore them.

Please report any content you feel violates our community guidelines through Facebook’s reporting tool found under the right side of every post “report to group admins” to review. All admins will get the notification and review the questionable content to see if it does not meet our Community Guidelines.

To reach the admin team, you can email admin@hopeforhie.org, or message the public Facebook page where all admins will receive your message. Please be respectful and do not message individual admin accounts, as those are personal spaces.

Subgroup Offerings


We have a number of subgroups providing specialized support for a variety of topics that work better in a subgroup format. Each group operates under the same Community Standards & Guidelines as the rest of Hope for HIE’s network. However, the discussion is focused on the sub-group topic. 

Each group has a dedicated team of admins & moderators who are experienced in the topic at hand. Additional “house rules” may be in place, depending on the subgroup.

Subgroup List

Please note: this link is optimized for use on computers. We have made Meta aware of the glitch where it is broken from mobile & app devices.

If there is a sub-group that does not exist for your area or need, please contact admin@hopeforhie.org.

Newly Diagnosed Families

We recognize and understand the grief, trauma and difficulties our new families are facing. We have a New to HIE subgroup set up specifically to provide more in-depth support with specialized support programming from Hope for HIE staff and Peer Support Mentors to help families with the immense learning curve that comes with HIE. We highly recommend families join the New to HIE group in addition to the main parent hub for a specialized place of support.

In addition, we have many other resources for families that can be found:

Support Programs & Services

Peer Support: What is it?

“Peer support” refers to a process through which people who share common experiences or face similar challenges come together as equals to give and receive help based on the knowledge that comes through shared experience.

A “peer” is an equal, someone with whom one shares demographic or social similarities. “Support” expresses the kind of deeply felt empathy, encouragement, and assistance that people with shared experiences can offer one another within a reciprocal relationship.

Peer support as an organized strategy for giving and receiving help can be understood as an extension of the natural human tendency to respond compassionately to shared difficulty.

Most people who have been through hard times empathize with and have an urge to help when they meet others who struggle with similar problems. It not only benefits the person receiving support, it makes the helper feel valued and needed.

Peer Support in Hope for HIE

In Hope for HIE, we connect as peers with an understanding that our community is made up of people from all backgrounds, varying personal and family values systems, cultures and life circumstances. How we connect as peers is set up in a clear and consistent framework to move forward in a productive and helpful manner.

Our community is intended for people to be actively engaged in support. We define support as giving personal experience to a situation, giving positive moral support and connecting participants to each other who have shared similar experiences to learn from one another.

We respect that each family has their own dynamic, outcome and journey to travel, and expect our families to have respect, empathy, tact and curiosity for others journeys, to build the positive experience we all wish to maintain.

Hope for HIE’s comprehensive support network began in 2010, and has evolved to connect families around the world by circumstance, age, outcome, location and various topics relating to development.

We connect in authentic, clear ways that aim to be culturally competent and trauma-informed.

Fostering Connections

Peer support is a way to build connections and find commonalities, and a way to build community.

In Hope for HIE, we do this through our global peer support network — fostering opportunities to connect online and in-person.

Sharing Lived Experiences & Resources

Peer support includes sharing your lived experiences in your connection as a parent or caregiver to someone with HIE, resources that have helped you – location and online-specific, and things you have learned along the way, with being respectful to the diversity of experiences in a peer support network.

Boundaries & Community Culture

Every peer support community has set boundaries, definitions, language and community culture to ensure those that choose to be a part of the community are able to best support others and be supported in a safe, healthy and productive way.

Our Community Guidelines & Standards can be found at HopeforHIE.org/communityguidelines.

What is Outside the Scope of Peer Support?

In many medical-based communities, it can be easy to blur lines between what is peer support and what should be elevated to a medical team, mental health professional, or other outside source. Peer support communities cannot review, evaluate, diagnose, or treat medical conditions, medical records, videos, or medications, or act as a clinician or therapist (even if outside of the peer support community a member may have specific training).

What if I Have Professional Experience Relating to the Topic?

We have an amazing wealth of knowledge in our community, and have family members from all sorts of backgrounds, and career paths. We want to ensure boundaries are clear for you, community members & the support network. If you have vetted resources to share relating to the question that you know from your career, please feel free to share. If you are identifying yourself as a professional relating to the topic, any attempt to give medical, therapeutic, diagnostic, etc. advice in our peer support network should be avoided, including via direct message. This also potentially violates the code of ethics in the affiliated profession.


In addition to our Facebook groups, we have many peer support programs and services:

Learn More

Parent Support Hub Structure & House Rules

We heavily utilize our pinned posts to help keep the flow of information steady in the main discussion threads. This allows the main feed to be focused on families asking questions and needing direct support. 

Weekly Mentions

Weekly Mentions – Each Monday, a thread is started for CELEBRATION posts. This is the spot to post pictures and talk about inchstones, milestones, new equipment that’s working, therapies, happy moments you want to share with the group. Photos and videos may be posted freely! This is also a place you can post personal fundraising efforts for your child (not for overall living expenses since we are all in the same boat) and any contests your child has been entered in (once per week).

Member Marketplace

Member Marketplace – We have created a subgroup for families to post equipment/supplies they may be selling, items that our members may have made that would benefit our families, etc.

Member Marketplace Link

Friday Photo Bomb

Friday Photo Bomb – Each Friday a thread is started for fun to show the faces of our beautiful children. This is not the same place to post celebrations, but rather just simply a place to ensure everyone can appreciate how wonderful each of our children are.

Birthday Celebrations

Birthday Celebrations – Birthdays are a big deal, filled with big emotions for our parents. Feel free to share in the main feed about your child’s birthday! Also, we have a birthday card outreach program you can request here to get a card for your child’s birthday.


Reflections – Reflections about the journey with HIE are always welcomed in the main feed, as long as they are within the scope of the community guidelines. These are also different than the content that belongs in the Weekly Mentions section.

Video, Medical Records, Imaging, Medication Management Evaluations
  • Videos, Medical Records, Imaging, Medication Management, Asking for Diagnoses, Interpretation, etc.We appreciate the diligence of our families and the trust you have with our network to bounce ideas off of each other when it comes to concerns with your child’s development, understanding HIE, and more. As a peer support network, we are not a substitution for medical advice, and cannot provide feedback on the following, and these types of posts will not be approved:
    • Videos with concerning movements such as seizures or other movement disorders looking for identification
    • Interpretation of medical records
    • Interpretation of imaging such as MRI or Ultrasound
    • Advice on medication management, dosage, weaning (you CAN ask about people’s experiences with various medications)

Admin Reminders

Admin Reminders – Occasionally, the admin team will post a topic for the membership to take note of. These are just a way to keep communication lines open to keeping the place a safe, positive place to be.

Group Housekeeping & Facebook Tools

We have built out several how-to videos in our GUIDES & FEATURED sections that will teach you how to use Facebook’s tools to maximize your experience in the groups. Please take a look!

Searching Past Posts

Searching Past Posts

The forums present a trove of information from previous discussions. Please use the SEARCH function, topic tags, etc. for a specific topic before you post asking on a new topic. You can also filter by most recent, who posted, by date, etc.



If you do not get an answer to a question in 24 hours, you may “bump” up a post, once per 24 hours. Sometimes people may not have the experience to share on a specific topic, and we know it can be difficult to wait for an answer, but consistently bumping posts detracts from the flow of information.



Commenting that you are “following” a post, without giving additional insight or support, detracts from supporting the original poster. Facebook has a feature to “turn on notifications for this post” that can be accessed by tapping the downward arrow (or … in the upper left of the post) and selecting that option on any post.

Any comments of “following”, “f”, “*”, etc. will be removed either via the automatic admin tools or manually by admins.

Trigger Warnings

Trigger Warnings 

What started with good intentions across social media has actually been researched and shown to cause more “triggering” by using them, so we do not use trigger warnings in our groups. 

Pictures in Posts & “Pic for Attention”

Pictures with Posts

Pictures are always welcomed along with on topic posts, as long as they are aligned with the post topic & do not contain nudity, bodily fluids, or photos that do not promote dignity or respect.

Calling out a “picture for attention” isn’t necessary.


Exchange of Information

Because our support network is focused on a health-related diagnosis, we promote health information literacy & sharing quality, vetted, accurate information. is of utmost importance and something we take very seriously in order to ensure people gain an accurate understanding of HIE, and are able to share more accurate information in their own personal advocacy and awareness initiatives. 

Sharing Credible Information

In the era of misinformation on the internet, here’s a helpful graphic to help our families learn what is considered credible information:

Health Information Literacy

Entering the world of HIE is complex. 9 out of 10 adults have health literacy gaps, despite any educational background.

Why is this important to know? Because mixing trauma, grief, parenting and trying to help your child thrive can also make families vulnerable to people preying on them with treatments & therapies that may not be safe or effective, are often based in pseudoscience, have good marketing, and typically put a family’s financial safety in jeopardy.

Hope for HIE is strongly committed to bringing credentialed, evidence-based information, including emerging therapies that show efficacy and safety, to the community, and providing training for our families to build their health literacy skills.


National Library of Medicine Digital Health Literacy Training

Bias in Social Media

Your unique experiences with HIE & outside of HIE are your own.

They may or may not apply to others, because HIE is complex and no two brains are impacted by HIE the same way.

Each person carries their own biases & perspectives based on how they experience life with their own cultural, family, religious, community beliefs & values. None are inherently good or bad.

Everyone has bias!

Personal bias refers to the attitudes, beliefs, and opinions that an individual holds that may unconsciously influence their judgment and decision-making.

How we understand our own biases as we seek and give support can decrease the disconnect between intent (what we hope to do — typically it’s support someone) vs. the impact (how the person feels about the support given).

Bias in Social Media

It can be easy to read through stories and believe personal experiences add up to evidence that something may be effective or ineffective. It’s important to understand research practices & rigor, as well as the often found fallacy of causation & correlation. Anecdotes MAY correlate to evidence, but until it is put through a scientific process, and replicated, it cannot be deemed effective.

Resources on Understanding Bias:

Understanding Cognitive Bias
50 Common Cognitive Biases

Navigating Support, Empathy, Outcomes, Platitudes & Difficult Conversations

HIE is complex. It has a wide range of outcomes. No two children have the same brain, brain impacts, potential for recovery, & everyone has a personal definition of Quality of Life.

Because we have families facing a wide range of outcomes, impacts & decisions, and because the topics at hand are often filled with complex emotions, trauma, grief and other difficulties, we know these conversations can be difficult to find the right words of support.

We have developed a comprehensive support framework based on the complexities and nuances that overlap in social media and difficult diagnoses like HIE. Because social media has limitations, such as an inability to accurately share “intentions” or “tone of voice”, and things can be misread, misinterpreted, or people do not have practice in the most helpful ways of participating in support groups, we offer some different resources to consider when engaging in social media support groups.

Diversity in Hope for HIE

Worldwide Community

HIE does not discriminate in who it impacts. Globally, HIE is the second leading cause of infant mortality and impacts roughly 2-3 per 1,000 live births in developed countries and 10-20 per 1,000 live births in low and middle-income countries. We believe there is the greatest strength from being open to one another and learning about our diverse global community, to move forward advocacy, improve the state of HIE care and research, and supporting families. We bring the World Health Organization lens of Social Determinants of Health in the work we do, and in our support offerings, to build a healthy, effective and supportive community.

Each community and country has vast differences in medical, insurance programs and services, cultural practices and differences, etc. We also have diverse family structures and make ups by race, ethnicity, sexual orientation, gender identity, birth parent status, extended family support, and other definitions of diversity. No health system is perfect, and there are benefits and drawbacks to each around the world.

As a marginalized community advocating for people with disabilities and their families, members projecting righteousness, superiority, hate, or discriminatory ideologies on other marginalized populations (race, ethnicity, sex, gender identity, age, disability, etc.) either in our group, or publicly, are not welcomed in our community, and will be removed.

Religion​ and Politics

Both topics are about as individual as each child’s HIE outcome. We are a worldwide group, many who practice religion and many who do not, many who have specific political views, and many who do not. Please avoid projecting your religion or lack thereof on others, and your political beliefs, or lack thereof on others.

Asking, Receiving or Giving Support

Social media has powerful tools, and connects billions of people across the planet. It can help, it can hurt, and it is filled with complexities and nuance.

Hope for HIE has been connecting families via social media since 2010. We have developed a comprehensive support framework based on the complexities and nuances that overlap in social media and difficult diagnoses like HIE.

It’s important to take a pause before engaging in online support groups and find the discernment on what peer support can provide, how you can provide it to people, and how you accept feedback and input from others. Sometimes social media support groups aren’t the best places for different needs, and that’s ok, too.

Discussing Outcomes

Outcomes are a natural topic in our community, but they are not the focus of our community, as they are so individual and dividing by outcome prohibits connection. Due to the nature of social media, please be extra aware to avoid utilizing verbiage:

  • That insinuates one outcome is superior to another, labeling someone else’s situation as “worst case scenario”, etc. as this perpetuates stigma against people with disabilities,
  • Including phrases such as “defying the odds”, “prove the doctors wrong”, and “never give up”. These further exacerbate trauma to struggling parents, and many times are flatly inaccurate.
  • Commenting or insinuating parents aren’t trying hard enough to help their child
  • Implying your choices, religion, etc. are the reason for your child’s outcome and projecting that upon others who make different choices.
  • Being dismissive of others feelings/trauma/grief by projecting your own grief and partaking in “Suffering Olympics” (“be thankful your child does xyz”, etc)
  • Posting commentary that is seen as pity. This further stigmatizes our children.
  • In addition, if you have no personal experience on a topic, please refrain from personal comments that are against the spirit of support.

We HIGHLY ENCOURAGE families to take the leap to learn from each other across all outcomes, to appreciate the joy and love that each child brings, and to avoid pity, bragging and shortsighted commentary that divides the group. Divisive, inaccurate, stigmatizing posts/comments will be removed by the admin team.

Difficult Topics in the HIE Community

HIE is complex. It has a wide range of outcomes. No two children have the same brain, brain impacts, potential for recovery, & everyone has a personal definition of Quality of Life.

Because we have families facing a wide range of outcomes, impacts & decisions, and because the topics at hand are often filled with complex emotions, trauma, grief and other difficulties, we know these conversations can be difficult to find the right words of support.


Medical Complexity Topics:

HIE can impact the ability for the body to sustain life without intervention: breathing, swallowing, eating and organ functioning. Sometimes these are reversible, sometimes they are not.

These decisions can include:

  • Feeding tubes
  • Tracheostomy
  • Dialysis
  • Surgeries
  • Medications
  • Pain management
  • Colostomy
  • Long-term PICC lines


End of Life Decision Making

HIE can impact the ability for the body to sustain life with or without interventions: sometimes end of life decisions have to be made.

These decisions can include removal of life support measures:

  • Sometimes include items on the list to the left
  • Breathing tubes or assistance such as ventilators
  • Vasopressors that keep blood pressure up
  • Do Not Resuscitate (DNR) orders
  • Nutrition & Hydration
  • Pain management


Resources on Complex Decision Making:

Participating in Difficult Conversations

HIE is filled with complexity. HIE itself is a sentinel or “watershed” event — a life-altering event that changes your life in a deep and significant way no matter what the outcome may be. And, there is much uncertainty in these acute/complex care times.

There are also “watershed” conversations & decision-making that many families have to take part in & seek peer support in our community. Sometimes they can be difficult to read about or be exposed to. Sometimes we think we have experienced a similar situation, but haven’t & can provide more general support. Sometimes we have experienced the situation, & have experiential support to offer.

Families sharing for the first time, who may or may not be in the NICU or PICU at the beginning of their journey, or those facing additional decision-making require extra thought and discernment with peer support.

For these “watershed” conversations, take a look at some Do’s & Dont’s of support.

Helpful Support Tips:

Share affirmations of love & support for this part of their journey – keeping it simple is usually the best.

Some examples: “I’m here for you”, “this is very difficult, and you’re doing your best in an impossible situation”, “You’re not alone”, “I’m thinking of you and your family”, etc.

Share personal experiences if asked for & you have made the specific decisions & experiences asked about. This allows families to connect with others who have been in the very specific situation they are asking about.

Please note that even two people in the same or very similar situation with similar injuries, making the same decision may have two VERY different outcomes.

Share love in good faith, understanding that every decision made in our community is one made with love. The last thing anyone needs when faced with crossroads decisions is doubt or judgement. Each family has their own beliefs, definition of quality of life, and situations. They may not be the same as yours, and that’s ok!

Take a pause before commenting & know you don’t have to comment if something is uncomfortable, triggering or not applicable for you. It can be hard to turn off the computer or close out your phone apps, but practicing this helps set healthy social media boundaries for you, and for other people.

Reach out for support. Need a gut check before hitting send or post? Message Hope for HIE Foundation – Hypoxic Ischemic Encephalopathy, or reach out to our social worker, peer support mentors, or other support resources you can connect into at HIE.Support.


Things to Avoid in Difficult Conversations:

Sharing “Then vs. Now” photos of your child commenting on a watershed post. We want to keep the focus on the person posting & their child bringing in the understanding of the helpful support section. The intent may be positive, but the impact can be hurtful.

Bringing your own biases, values, beliefs, religion, platitudes, etc. assuming someone has the same as you. We are a beautiful, diverse, worldwide group of families. Some are religious, some are not. Some will share the same values as you do, some will not. Unless someone specifically is sharing their beliefs in a post, assume that person may not have the same beliefs as you do and comment accordingly.

Telling people to “not give up” or “don’t give up hope!” People don’t give up on their children. Being realistic and accepting what they are being presented with and witnessing with their own eyes is not up for debate & inappropriate to bring into these difficult decisions. If their expected outcome is different from yours or their choices are different from yours, it will never be because they “gave up.”

Attempt to “convince” someone to make decisions. This one comes with the best of intentions, and sometimes if we see someone make a different decision it may cause you to second guess your decision. Keeping the focus on the person in need of support will help this.

Bring your own fears & feelings into the conversation: “this is my worst fear/worst case scenario, I can’t imagine being in your position”. Again, this is not keeping the focus on the person seeking support & can unintentionally cause additional hurt to the person seeking support. Nobody wants their child viewed as someone else’s “worst case scenario”.

Attempt to diagnose, evaluate, or give medical advice. This is a peer support network, which means even if you have clinical/professional experience outside of this group, inside this group we connect as peers. Medical advice, evaluation, etc. should be done by the child’s medical team.

Reach out for support. Need a gut check before hitting send or post? Message Hope for HIE Foundation – Hypoxic Ischemic Encephalopathy, or reach out to our social worker, peer support mentors, or other support resources you can connect into at HIE.Support.

Sharing Personal Experiences & Expressing Concerns

Sharing personal experience is very different than sharing medical advice and medical information. Any information that directly conflicts with vetted, evidence-based, accurate medical information on HIE and related conditions will be removed. If you do not have personal experience to share, please watch what information you share and ensure it is accurate. Inaccurate information will be removed.

We have a variety of outcomes. All concerns are valid and welcomed to be shared, no matter what the concern is, across all outcomes. Invalidating others concerns is not aligned with the culture of Hope for HIE, and everyone should feel comfortable expressing whatever concern they may have. HIE comes with a lot of baggage to unpackage, and we are here to help you sort through it in a constructive manner. 

Professional Experience in a Peer Support Network

We have an amazing wealth of knowledge in our community, and have family members from all sorts of backgrounds, and career paths. We want to ensure boundaries are clear for you, community members & the support network. If you have vetted resources to share relating to the question that you know from your career, please feel free to share.

If you are identifying yourself as a professional relating to the topic, any attempt to give medical, therapeutic, diagnostic, etc. advice in our peer support network should be avoided, including via direct message. This also potentially violates the code of ethics in the affiliated profession.

For medical professionals:

Journal of Medical Ethics Article

Tact & Sensitivity

Tact and Sensitivity

We have a full range of outcomes and communicating with tact and sensitivity comes with using accurate terminology and word choice that is appropriate. We know that entering into a community with such a wide range of outcomes can be like learning a new language, and there is a learning curve. While we show each other grace, you may have an admin give a gentle nudge or reminder, or you may have something removed and be asked to repost. We do this for the good of our groups as we come together across all outcomes and have learned along the way.

Due to the nature of so many children with HIE being diagnosed with lifelong disabilities, any sort of negative perpetuation of stereotypes or use of degrading language that demeans people with disabilities, in the group, or publicly, will result in removal from our network. It is in direct conflict with our mission. 

Likewise, we work to reduce the negative stigma behind disabilities. Think before posting how it appears to someone with a different outcome than yours, and that these are people’s children you may be projecting about. Verbiage that is deemed inaccurate or lacking tact and sensitivity will be flagged and removed. We have built an educational GUIDE in the Parent Support Hub to address ableism and reducing stigma in disability.

Staying on Topic, Screenshots, & Posts from Outside our Network

Staying on Topic

The common thing that brings us together here is our HIE experience, and that’s what we’re here to discuss. Please stay on topic about HIE, and the specific topic at hand. This includes all the ways that HIE affects your lives, so it’s far from restrictive.

Screenshots & Questions/Posts from Outside our Network

Bringing in questions/posts from others who are not a part of our network and do not have a connection with HIE is not allowed, as it takes focus away from our engaged HIE families. The same goes for bringing in screenshots, drama from other groups, or posts outside of Hope for HIE. While we do encourage advocacy, we deeply discourage online mob mentality.

Please be aware that our network groups are closed. Everything said and posted here is intended to remain here and go no further. People here share their deepest feelings, fears and thoughts, often sharing information they would not elsewhere. Unless with the expressed permission of individual members, no material posted here is to be shared elsewhere for any reason, including lifting photos, screenshots of conversations, copying and pasting, etc. Doing so will result in immediate removal from the group.

While we cannot prevent this, when we see it, we will act accordingly.

Posting with Dignity & Respect

Posting with Dignity and Respect

We recognize that there are many instances of sharing the real and raw parts of our journey together. We also recognize that each of us as parents have a duty to protect our children, and promote representing those with disabilities with dignity and respect. 

Photos and videos posted by caregivers, parents, etc. throughout social media that show private body parts, do not promote a dignified essence of the person represented (people laying in their own feces, excrement, bodily fluids, screaming relentlessly in excruciating pain, seizing, etc.) are under legal scrutiny. Photos and videos of this nature will be declined & removed immediately.


Vaccination posts are not allowed. Please work with your medical team to determine the best course of action for your child’s health. All posts, comments, etc. regarding vaccinations will be removed. Continued belaboring, attacking admins, etc. on this issue will see members muted and/or removed permanently from our network.  

Personal Attacks & Fear Mongering

Personal Attacks & Fear Mongering

Personal attacks on members or admins will not be tolerated, and will be deleted at the discretion of the administrators. This is not to say you can’t disagree, or express your opinion – it is to say that stating things in a respectful manner, even with disagreements, is required, as is keeping on topic and sharing personal experiences. Providing additional information on a subject or more clarification to a topic when presented in a respectful manner is not a personal attack.

Posts that are flagged by members or admins for fear-mongering may be removed at the discretion of the admins. Continued efforts to spread misinformation, fear monger, or attack may result in muting or removal of the member.

Badgering & Belaboring Topics


There is no need to repeat the same point multiple times, nor any need to post about the same topic over and over again, expecting different responses. Badgering or belaboring posts and/or will be deleted, or an entire thread will have comments turned off. We encourage you to go back to your previous posts shared on the same topic, edit, update and comment — it will pull it up to the top of the group, and others who have previously commented will get a notification on your new comment.

Badgering, belittling or attacking moderators and admins because they have enforced the community guidelines and standards will also not be tolerated and may result in removal from our community.

Blocking Members & the Admin Team

Blocking Members & Admins

You can block anyone on Facebook, and if you do so, you’ll see no further posts or comments from them, and they will no longer be able to see anything you post. If you find that a group member routinely posts opinions or information that bring out negative feelings in yourself, it is your responsibility to block them to avoid conflict rather than reacting to everything they say. If this becomes a chronic issue, you will be asked to either stop commenting, or remove yourself from the group. 

Blocking admins is not allowed. Should you block an admin, you will be removed from our network.

Soliciting Group Members

Soliciting Group Members

By being a member of the Hope for HIE forums, you agree to not spam or solicit our membership individually through personal messages, in person Hope for HIE events, promoting business ventures, etc. and contain promoting personal businesses or fundraisers to the weekly MEMBER MARKETPLACE subgroup.

Harvesting members from our group for other groups is also not allowed and posts will be removed, and you may either be placed on a break or removed, depending on the severity.

View our full non-solicitation policy below:

Non-Solicitation Policy

Other Options for Support

Remember that there are other options

Everyone’s journey is an individual one, and we wish you the best finding the spot you feel most comfortable expressing your journey. If you are not comfortable with these Community Standards and Guidelines, we wish you well and hope you find a place that you are comfortable with.

Families who choose to leave the group for their own reasons are always welcome back if they feel ready to return. However, if you have been removed for the group by the admin team, cultivated unnecessary drama upon your exit, or other extreme circumstance, you will not be welcomed back.


Legal Disclaimer: Hope for HIE’s organization and its admins highly suggest families treat this group as an extension of an open internet, in regards to legal matters. While we are careful to screen incoming members for their connection to HIE, adding in only parents and immediate family of their choosing, Facebook has its own terms and conditions for data storing and any material asked for during a discovery process for any legal matters is out of our hands. Deleting previous posts will not delete them permanently from Facebook’s cache. We remind members to be mindful of the information posted, as always.

Medical Disclaimer: Hope for HIE’s forum contains posts on many medical topics; however, there is absolutely no assurance that any statement contained or cited in a comment touching on medical matters is true, correct, precise, or up-to-date. Even if a statement made about medicine is accurate, it may not apply to you or your child. The medical information on the forum cannot substitute for the advice of a medical professional (for instance, a qualified doctor/physician, nurse, pharmacist, etc.). None of the individual contributors or administrators of the forum can take any responsibility for the results or consequences of any attempt to use or adopt any of the information presented on this group.

Hope for HIE Trademark, Entity & Graphic Usage: Hope for HIE is a legal, nonprofit organization that is protected under international trademark and copyright laws for the content, graphics, and designated themes that we produce for public consumption. Our logo, artwork, graphics, awareness campaign artwork and themes, etc. are not to be reproduced, altered (also known as creating “inspired by” designs), or taken outside of the context in which we allow sharing without the permission of the foundation. We partner regularly with small businesses who become contracted, approved vendors to use elements or the entirety of our designs, themes, logo, etc. on products, and would welcome you to reach out to admin@hopeforhie.org to discuss setting something up.


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