Please read all information on this page before joining.
Important links and problem solving tips are provided.
The NBIA Disorders Group Forum is open to anyone who is interested in Neurodegeneration with Brain Iron Accumulation. This can include individuals with NBIA, their families, friends, doctors, caregivers and researchers. Once you subscribe to the forum, every email sent to the group will automatically go out to you. It comes into your email inbox so you don’t have to hunt elsewhere for postings. You can also go to the group site online if you wish to view, post or respond to messages. You may just want to learn by reading what’s there.
This group is very useful to families who want to share information, ask questions or exchange news about therapies they’ve heard about or tried. It’s also a way for families or affected individuals to give and receive emotional support. Because we are so spread out geographically, this is an opportunity for families to network quickly and easily.
The organization also uses this forum, powered by Google, to post announcements and other important news for NBIA families.
If you do not yet have a Google account, you will be instructed on how to set one up. It is free. You may use your current email address for the group and do not need to create a gmail address. You will be sent a link to verify your email address if it is not gmail, and once you do this, you will have a Google account.
You will then be able to request to join our group. This is a closed group and not open to the general public. Only members of the group can see and post messages. Once you are approved for membership by the group administrator, you will be sent an email indicating that you have access to the group and may begin posting and receiving messages from others subscribers. You can also see all past postings which can be a valuable source of information. They are searchable by keywords to make it easy to find topics of interest.
To "unsubscribe" from the group, simply click the "unsubscribe" link at the bottom of the message list from the group. You will be sent a message from the group indicating that you have been "unsubscribed".
If you choose not to do this, then you may not be able to receive postings from the group or email from Patty Wood. This may also affect our ability to approve your subscription email. The group administrator may need to contact you through email before approving your subscription requesting further information before adding you to the group.
If you have been approved as a member, you may also want to check the group site to see if there are postings you have not received. If you are missing messages, you may have to contact your Internet service provider. The problem could be with the provider blocking messages for some reason.
Click the "Join Our Group Forum" button near the top-right of this page to join us!