There are thousands of medical and parenting resources on the internet. This is just a selection of sites that have been particularly useful for me. These sites also provide a good starting point for anyone searching for information. If you have, or know of, a site that should be included here, please contact me with the details and I’ll try to include it.

www.nemaline.org is the first and best site for information about nemaline myopathy on the internet. It also has a well established and knowledgeable email group.

www.our-kids.org is a fantastic site for all aspects of disability parenting. It also has an active and supportive email group.

www.angels4ever.com is a site for those who have lost a baby. As well as a mailing list (including one for loss in multiple birth) they have some good grieving resources.

www.tracheostomy.com has an email list as well as some of the best resources for parents of kids with tracheostomies.