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: November 16 , 2009
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 researchers!
Invited speaker makes interesting discovery.


Can you help these fundraisers?
Memory of Matthew East, UK
Ralph Mattison, UK
NM Support Group
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 top or 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.

NMC09 Photos!
Introductions
 Research
Resources
 Miscellaneous

Dr. A. Beggs (June 17)
Dr. C. Wallgren-Pettersson (Sept. 13)
Prof. N. Laing (July 20)
Prof. K North (June 11)
Research projects (June 30)
ENMC (Oct. 18)
Genetics (Oct. 5)
Bibliography
Science papers online (June 28)

Advice (June 10)
Explaining (Oct 31)
Therapies (Aug. 16)
Patient care (Sept. 13)
NM Support Group (Mar. 20)
NM Foundation (Jan. 19)

Retailers/Suppliers (Nov. 16)
Travel advice (July 26 )
Emergency lists for travel
Professional assistance (Dec. 1)
Equipment sale/swap/wanted/free (Mar. 13)
Ventilator agents
Drugs and supplements (Oct. 5)

Fundraising (Mar. 18)
Around the world (June 10)
Personal webpages (Oct. 13)
In the news (June 17)
Photos (October 17)
Poetry
Birthdays (Dec. 11)
Professions of a Nemaliner (Apr. 13)
FAQ (Apr. 13)

Meetings (Feb. 11)
Memorials (July 17)
Majeda's page (Nov. 11)
NM Convention 2004
NM Convention 2007
NM Convention 2009
NM Convention 2011 (details coming 2010)

Email Chatgroups
Active Family Discussion Group
(190+ 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 42 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, 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: November 16, 2009
© David McDougall. 1999-2009
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 information 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.