This web is for anyone seeking information about the rare genetic disorder nemaline myopathy. If you have NM, or you are a parent, guardian, professional or friend who cares for someone with it, then there are new friends out there who wish to hear from you. Learn from those who know the game.

The official encyclopaedia for NM

Born: July 18th, 1999
Updated: February 8, 2010
Relaunched:
November 11, 2001
10th Anniversary!


The Nemaline Myopathy Support Group
subscribes to the Genetic Interest Group.

 
Uniting families, doctors, support professionals and scientists.

Exclusive article
Possible cure for actin mutation


NM Convention 2004 helps researcher!
Invited speaker makes interesting discovery.
Amazon UK website
Order Niki's book or any other goods through this image link(left) and earn us commission towards the next NM Convention. The important thing is that you start by using our link.
Use the International button at the bottom of the Amazon page if you live outside the UK. Goods for delivery outside of UK can still be ordered through the UK website, but costs are worked out in Sterling. Please see the NM Support Group page for more information.

Can you help these fundraisers?
Memory of Matthew East, UK
Wheels for Ralph, UK
NM Support Group
Introductions
 Research
Resources
 Miscellaneous

Genetic testing (Feb. 8)
Dr. A. Beggs (June 17)
Dr. C. Wallgren-Pettersson (Sept. 13)
Prof. N. Laing (July 20)
Prof. K North (June 11)
Research projects (Jan. 29)
ENMC (Oct. 18)
Bibliography
Science papers online (Jan. 13)

Advice (June 10)
Explaining (Jan 9)
Therapies (Aug. 16)
Patient care (Sept. 13)
NM Support Group (Mar. 20)
NM Foundation (Jan. 19)


Retailers/Suppliers (Jan. 27)
Travel advice (Jan. 10 )
Emergency lists for travel
Professional assistance (Jan. 21)
Ventilator agents
Drugs and supplements (Jan. 13)

Email Chatgroups
Active Family Discussion Group
(200+ families subscribed.)
10-25 Year Olds Group
Espana egroup por MN
Deutsche Chat-Gruppe
Gruppo italiano di chiacchierata


To date, over 450 people have contacted me from 45 countries. See Around the world for a breakdown.
Argentina, Australia, Austria, Bahrain, Brazil, Burma, Canada, Chile, Cuba, Denmark, England, Estonia, Finland, France, Germany, Greece, Hungary, Hong Kong, Ireland, India, Iran, Israel, Italy, Korea, Latvia, Malaysia, Netherlands, Norway, New Zealand, Pakistan, Palestinian Authority, Panama, Romania, Saudi Arabia, Scotland, Senegal, South Africa, Spain, Sweden, Switzerland, Turks & Caicos Islands, Turkey, Uruguay, USA and Wales.

This page was last updated: February 8 , 2010
© David McDougall. 1999-2010
Contact: davidmcd_@hotmail.com. All received emails will be answered. (Please quote Nemaline Myopathy in the subject line.)
Disclaimer
This web site is here as a starting point for anyone seeking more information about nemaline myopathy and contacting other families whose lives are effected by it. The details provided and linked to this site are for information purposes only. All information is provided in good faith and with the understanding that I do not offer medical or professional services, of any kind. It is recommended that you should not use the information without consulting your doctor. No warranties of any kind, are expressed or implied. I do not accept liability for any loss or damage resulting from the use or misuse of any info contained on this site, nor for any errors or omissions. Basically, use this site at your own risk! Surfing this website can seriously increase your knowledge of NM. ;-)

This is NOT a medical site. It is intended for informational purposes only. Please contact your medical professional if you have questions about your specific condition.

Links on this site have been included as areas of possible interest. I cannot vouch for the accuracy or suitability of information you may find on them, or on sites linked to them. Information may concern prognoses and must be treated with sensitivity. Be VERY wary of any site that offers treatment or cures and always ask for independent, professional medical advice before you contact a site of this type. If you are not medically qualified and find an item that worries you please discuss it with your doctor.