My son was born with these rare tumors, Melanotic Neuroectodermal Tumors of Infancy. He is seven now and I have never met or heard of any one else with this condition. All I can find is case studies and medical info. I know all the info about the tumors, but we want to know of some one else who has dealt with or is dealing with this.
2007-10-19 06:23:28 · 2 answers · asked by Lori 1 in Health ➔ Diseases & Conditions ➔ Cancer
Have you talked to NORD? They will know, or know who to ask.
http://www.rarediseases.org/
2007-10-19 06:51:27 · answer #1 · answered by thinkingtime 7 · 0⤊ 0⤋
This is a link to Cancerbackup, (I do not know in which country you live, I would guess the USA: The link is to UK. I regret that I do not know of the USA equivalent) which has internal links and telephone numbers. I would think that they might be able to point you in the right direction, or assist you with details. Hopefully, your son will not be amongst the 15% that suffer a recurrence. I wish you good fortune.
http://www.cancerbackup.org.uk/Home
Hope this helps
matador 89
2007-10-19 06:57:28 · answer #2 · answered by Anonymous · 0⤊ 0⤋