Welcome to the Cystinosis Research Network (CRN) Support Group. This is a forum to share questions, concerns, and experiences relating to cystinosis. More than 200 families affected by cystinosis are members of our group.

We are a group for individuals, families, and caregivers affected by cystinosis. Ultimate decisions regarding treatments and medication should be made in consultation with your physician. The CRN Support Group is sponsored by the Cystinosis Research Network www.cystinosis.org.

Please refer to the CRN Support Group welcome message you received for information on subscribing and unsubscribing to the group, obtaining archives and netiquette guidelines. The web address for this information is: http://groups.yahoo.com/group/crnsupportgroup/

Best Wishes,
CRN Support Group Moderators

Cheri Friend - Mom of Morgan, 15, Cystinosis, & Laurin, 21 & Jennifer 25, in Georgia, USA (cheri.friend@sungard.com)

Marybeth Krummenacker - Mom of Laura, 23, Cystinosis, & Brian, 27, in New York, USA (mkrumm@aol.com)

Pam Woodward - Mom of Tahnie, 26, Cystinosis, & Sierra (May 28, 1990 - March 28, 2006), in Utah, USA (rptswood@csolutions.net)



CRN Support Group Etiquette rules:

1. Please be respectful and polite when posting. The purpose of our group is to provide support to each other in a nonjudgmental fashion.

2. Please do not send chain emails.

3. When replying to a message please include only the part of the original message that you are referring to, but please do include that so that people can put your reply in context.

4. Use accurate subject lines. If the subject has changed from the original subject then change the subject line.

5. Do not type message in all capital letters, as this denotes anger and is akin to yelling.