Hermansky-Pudlak Syndrome Network Inc

Currently there are three Yahoo! groups available for those affected by Hermansky-Pudlak Syndrome or Chediak-Higashi Syndrome. The HPS Network does not have the capacity to run online groups from its own Website. Thus, two of our members (Heather Kirkwood and Carmen Camacho) have set up these Yahoo! groups and closely moderate them as a service to the HPS community. They consult closely with the Network, as well as the Network’s Medical Advisory Board, to ensure the communities are kept up-to-date and that quality information is shared.

What is a Yahoo! Group?

A Yahoo! group is an online community of members who can e-mail one another using a common group e-mail address. When one member sends a message to the group, it is seen by the others, who can then respond.

What are the three Yahoo! groups?

The HPS Adults group is for adults (over 18) with Hermansky-Pudlak Syndrome.

The HPS Families group is for parents of children with HPS, spouses, partners, family or friends of those with HPS.

The CHS group is for those affected by Chediak-Higashi Syndrome.

Advantages to belonging to one of the Yahoo! Groups

• Immediate updates about what's happening in the HPS/CHS family
• A constant source of support anytime you need it
• A great way to quickly get questions answered. If no one on the list can answer your question, the moderator will consult with our experts and help you find an answer.

"I read all of the posts but I must admit I don't contribute very often.  Based on what I have read, I do have some personal observations I would like to share with all of you.  I hope you will indulge me.  The ... positive attitudes and good sense of humor I consistently see from the main contributors on the list despite the health issues they have.  It is a true testament to the fact that we may have not have control over out genetics but we do have control over out attitudes.  I just see lots of positive attitudes and the desire to help each other in whatever way possible.  On this website it seems to be the sharing of information and experiences is the way we help each other.  I feel privileged, even if it is in a small way, to be a part of it." - Gina

Rules of the road for the Yahoo! Groups

• These lists are designed to build community among those affected by HPS/CHS, provide support and to promote finding a cure. While "chatter" is permitted to help us get to know one another, keep in mind this is not a forum to promote political agendas, religious convictions or products. Remember, we come from all walks of life, faith traditions and have a wide variety of opinions. We can't afford to lose anyone in the battle against HPS over disagreements about topics not related to living with HPS. That being said, it's often hard to be ourselves or talk about our lives, or how we cope, without crossing into some of this territory. A rule of thumb is to talk about such things in terms of how it has helped or benefited you. Speak from your own experience. Don't criticize the experience or beliefs of others.
• English and Spanish posts are welcome. Please be patient with your moderators. We are online at different times and Heather doesn’t speak Spanish – so you may see some messages come through before yours. Don’t worry, Carmen will get to you!
• When you're new to the list, post a brief introduction. Tell us about yourself. Tell us about your hobbies; how you spend your time, what's important to you, etc. It will help us all get to know you.
• Remember that often e-mails are easy to misunderstand because you're not hearing a person speak or listening to their tone of voice. Don't jump to conclusions too quickly.
• The HPS Yahoo! groups are moderated, and messages are posted to the list at the discretion of the moderators. (Decisions of the moderators are final.) The moderators strive to keep a balance between the level of chatter and debate. Moderators often make as many as 50 plus decisions a day. They are often aware of situations among members that you may not be aware of – or of changes in the group dynamics that will warrant suspending discussion on a given topic to preserve good will in the group. The moderators strive to do their best to make decisions based on promoting the goals of the group – a supportive environment and dialog that works to promote finding a cure. Wanton and repeated disrespect of the moderators or their decisions will result in suspension.
• The moderators will not advise you that a message will not be posted unless you are new and we think that you may not understand how the groups work. The pure volume of e-mails reviewed in a day make it impractical. We find that most people know when they are breaking the rules anyway. Please consider that when you send e-mails through that you know are inappropriate, that you are wasting the time of the moderators. If you are truly unclear about why a message will not be posted, you can e-mail the moderators off list to ask for an explanation. Occasionally there are technical glitches that can misroute an e-mail. If you don’t see your post within 24 hours and you can’t imagine why it would have been withheld, it might be a technical problem the moderators need to know about.
• There will be people with whom you disagree, or that you just plain don't like. Remember, we're all entitled to our opinions, and you can't change other people. Don't take anything too personally; just cultivate the friends you find online. Remember – God created the delete key for a reason. If you find someone irritating, just delete their messages.
• We get to be good friends on the HPS Yahoo! groups. You'll often want to share things with your friends that aren't related to HPS. That's okay, just put "off topic" in the subject line of your post so those who aren't interested can skip it.
• Don’t forget to change the message line if you’re changing the subject of a message exchange.
• The groups are not meant to be medicine by e-mail. Although we work hard to check information shared, you should never take action based on something you read on the listserv without consulting your own doctors who know your own medical history.
• Often members will share very personal information on the list in search of support. Anyone using information shared on the list in a malicious way or in other public forum to attack or cause emotional pain will be suspended. We cannot police private e-mail or social networking groups, but if this comes to our attention, we will act on it. We will not be interested in what you perceive the other person did to you. If you can’t get along with someone – don’t communicate with them.
• While we want you to feel like you can share on the lists, please understand the moderators have no way of totally enforcing that what is said on the list, “stays on the list”. We will do our best, but please consider that this is an honor system and it isn’t perfect.
• Please do not share information about HPS’ers who are not on the list unless you have their permission. This can be a hard call for the moderators as we don’t always know what’s going on off line so please help us out and respect people’s privacy.
• Do not forward mass e-mail jokes, poems, or stories to the list. Many members receive a great volume of e-mail and don't wish to be flooded with such material.
• Please note that while we strive to moderate all messages, Yahoo! is not always a perfect system. There are times that unmoderated messages get through because of the occasional technical glitch.
• While most listserv members choose to receive mail whenever it's posted to the list, you can choose to be a member of the listserv, but not have messages pushed to your e-mail box. It is possible to log onto the group's Web site at your own convenience and read the messages. (For those who are feeling a bit of the e-mail overload.) There is also a digest format where you can receive the day’s exchanges in one e-mail. If you need help, contact your moderators.
• And, of course, remember that this is a family group. Keep it clean!