Currently there are five Yahoo! groups available for those affected by Hermansky-Pudlak Syndrome or Chediak-Higashi Syndrome. The groups are closed groups and closely moderated. Our moderators also work with our Medical Advisory Board to ensure the communities are kept up-to-date and that quality information is shared. If you would like to subscribe to one of the HPS Yahoo! Groups, please e-mail Heather Kirkwood at: email@example.com. Please put the name of the group you would like to join in your subject line.
You may also follow the HPS Network on Facebook at: https://www.facebook.com/hpsnetwork
Follow the HPS Network on Twitter at: https://twitter.com/#!/HPSNetwork
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.
The HPS Adults group is for adults (over 18) with Hermansky-Pudlak Syndrome. This group tends to be more medically oriented.
The HPS Young Adults group is for those with HPS, children of those with HPS or siblings of those with HPS who are under 30 years old.
The HPS Families group is for parents of children with HPS, spouses, partners, family or friends of those with HPS.
The HPS Weight Watchers group is for anyone in the HPS or CHS community interested in healthy eating. Healthy eating is important for both those with HPS or CHS, and for those who might be caring for them.
The CHS group is for those affected by Chediak-Higashi Syndrome.
"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