EB Zone - Welcome to the EBzone! Formerly known as 'EBworld', EBzone is the largest and oldest mailing list for the EB community!
This list is made to bring Epidermolysis Bullosa parents, patients and anyone interested in learning more about EB together as an informational and supportive forum. Suggestions and experience sharing is encouraged. All forms of EB are discussed and dealt with.
Brenda, the mother of a child with RDEB is your list owner. Welcome!
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EB Force for Action - EB Force for Action was created to bring together the EB Community under one roof, in the expectation that many may wish to have this option, including:
Parents of children with Epidermolysis Bullosa
EB Adults
EB Young Adults
Care Providers for persons with EB
Those who have lost a friend or family member to EB
This group is also for anyone interested in learning more about this devastating disease. Please use it as an information forum for providing suggestions, sharing your experiences, and supporting others.
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The NEBS - Welcome to The National Epidermolysis Bullosa Society. A place where you can come and ask any questions you have and provide any comments you wish on the care & treatment of those living with EB day to day.
I would like to make this place somewhere where we can all come as one and share about our common interests and goals. When we’re depressed AND happy, if it’s tied to EB or not. Everything in life comes full circle.
Always remember we don’t LIVE with EB, EB lives with US!
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EB Families - This is a support group for individuals, parents, and families with Epidermolysis Bullosa. We welcome every type of EB in this group.
We will be covering topics about wound care, pain managment, surgeries, medical insurance, and other things that can and do relate to EB, as well as day to day things about our families, lives, and children. This is another place where we can pool resources, and vent about frustrations, and talk about the wonderous things happening in our families lives. Every person is valued, and every insight honored.
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EB PEP - This group is for parents who do not have epidermolysis bullosa but who do have a child or children with this rare skin disorder. EB free parents who have children with this disorder often never knew EB existed until they had a child born with it. Wether your child has a mild or severe type of EB, we as EB free parents face certain challenges in raising a child who has it. Certain days are more difficult than others and it is sometimes very difficult to keep a positive attitude. This group is designed for EB free parents coping with similar issues to be able to support and share with one another openly and freely. We all need one another's support and sometimes loose sight of a positive approach to parenting a child with this disorder. Until a cure for EB is found, we must learn to teach both ourselves and our children, to cope with this disorder in a positive manner as possible. We all could use a good "PEP" talk now and then to keep our chins up! Don't you think?
I also wanted to add that this group is also being opened to those that have EB themselves, after all its those adults and such living with EB that can offer much advice and tips on what may have worked for them growing up or even now. You will not be discriminated against here. "Negativity" is a word that can be taking many way, so Please be kind, and remember we are all capable of GREAT things, especially when we work together.
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PAC_WEB - This is an on-line support group for parents who have the genetic skin condition called Epidermolysis Bullosa (EB) and who have children with EB as well. We all know how rare EB is to begin with, but those who have EB and go on to have children with EB, well, as we know there are not very many of us. The hope is that this group will bring together those with EB and that have children with EB. This will be a warm, loving place where we can laugh, find support, share thoughts, idea and suggestion; a place where we can vent to one another without worrying about what others will think; a place where we can all relate and know we are not alone!
You don't have to be the parent with EB to join. As long as one parent of the child has EB, the spouse or other parent of that child may join.
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EB Mommas - This group is for *MOMS ONLY* with children with severe forms of Epidermolysis Bullosa such as RDEB, Junctional or severe Simplex so we may support one another. Dads can join too!
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EB Simplex - Epidermolysis Bullosa encompasses a group of blistering skin diseases for which there is no cure and few treatment options. This list is intended to provide an open forum for Epidermolysis Bullosa Simplex patients, parents and friends to offer each other information and support about this skin disorder. EB Simplex is the somewhat less debilitating form of Epidermolysis Bullosa, and we would like to confine the list to posts relating to this form. Often, people who have or who are dealing with Simplex have trouble relating to the problems faced by people who are affected by the more serious forms of EB.
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RDEB Adults - This discussion group is designed to support adults living with the Recessive Dystrophic form of Epidermolysis Bullosa. Sharing personal experiences, family and health issues, offering helpful suggestions and tips. Providing support for the many challenges this condition places on us.
While we ask that all posts be presented in a polite and discreet manner we also encourage openness and humor.
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EB-DDEB - This is a list dedicated to all of the sufferers of Dominant Dystrophic Epidermolysis Bullosa and it's sub-types.
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Junctional EB - A Group for those people suffering with Junctional Epidermolysis Bullosa. It can be any type of Junctional. We discuss dressings, trachs, anything related to Junctional E.B. But all types are welcomed to join.
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EB Women - This discussion group is for women who HAVE the Epidermolysis Bullosa experience have issues that only other women with EB can understand. This includes support around such issues as psycho-social, body image, sexuality, self-care, employment, self esteem and general sharing by other women with EB. We cannot accept members under the age of 18
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EB Teen - This e-mail group is for teenagers, preferably ages 13 to 19 with the skin disorder Epidermolysis Bullosa. It's hard enough being a teen but to also have EB can be a daily struggle. This is a place to be able chat about whatever's on your mind, without being judged by your skin.
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EB Database - Epidermolysis Bullosa is a rare condition, and Drs are not always free to give out information about other parents or patients in the area or anywhere that might help because of different laws. This is why a volunteer database from willing parents/patients was started.
This database has names and email addresses and phone numbers from EB families all over the world that are willing to talk to new parents.
Because we want to keep this database available to only other EB families, make sure to reply to the introductory message with your personal EB legacy. Subscribers wishing to join who do not reply to the initial message within 10 days will be automatically denied membership. We do this to secure the families belonging to the database and keep lurkers and possible trouble out.
This database is downloaded once a month and upon subscription.
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Butterfly Children - Welcome to Butterfly Children - raising awareness of Epidermolysis Bullosa - EB
The Butterfly Children have skins as fragile as a butterfly wing - skin so delicate and fragile that even the slightest touch can hurt. Please join and show your support. This is a gathering place for people of all walks of life, and whether or not you've even heard of EB, you're welcome. Drop by, make yourselves at home, we're here for all. Stick some music on, get a cuppa, and grab a chair, or if you're like me, loll on the floor. Let's put the world to rights :)
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EB Angels - This list if for parents that have lost children or anyone that has lost a loved one to Epidermolysis Bullosa. For more information, please refer to the EB Info World website
and visit the Memorial section. New members are moderated to weed out spammers. "Who then can so softly bind up the wound of another as he who has felt the same wound himself." -- Thomas Jefferson
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EB Info World Awareness Group - A group of moms and friends (anyone can join), active in their intent of raising awareness for Epidermolysis Bullosa.
This is not a support nor chat group. This group is different. Ideas will be presented or can be exchanged and talked about to either create EB awareness locally or via the internet or we can get together and write in mass to a particular show and things of this nature. This is, by nature, a very low volume group.
A lot of files are downloaded once a month to the list and upon joining that you can use. These files will be updated regularly to be as accurate and up to date as possible.
Anyone is welcome to submit their idea or file to be downloaded to list members monthly.
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EB California - This is the Northern and Southern California EB (Epidermolysis Bullosa) Support groups mailing list. Meeting info, events, and ideas for everything related to the support groups will be announced here, and members are encouraged to exchange messages via this forum.
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EB-ONE - EB-ONE (Epidermolysis Bullosa of New England) is a support group for New England families who's lives have been changed by EB. We hope that this yahoo group will serve as an extension of the group to provide a place for group members to continue to communicate between meetings. Other than the obvious financial burden,physical pain, & mental stress; EB also creates lonliness. Due to it's rarity, the only people that know of this devastating disease, are the ones who live it. So please use this group as a place to spread your wings.
EB is unkown to most, but as ONE we can spread our wings...
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EB_Indiana - This group is for Epidermolysis Bullosa for support group with this disease. It's for Indiana and other surrounding states around Indiana. To keep in touch, and to help families who are effect by EB.
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EB Philly - This is the online message board for the Epidermolysis Bullosa Support Group of Philadelphia (also known as EBPhilly). Meeting minutes, events, and ideas for everything related to the support group will be announced here, and members are encouraged to exchange messages via this forum.
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DebRA_NC - This group is for Epidermolysis Bullosa for support group with this disease. It's for Indiana and other surrounding states around Indiana. To keep in touch, and to help families who are effect by EB.
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