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
 Our song : Search for the hero

Born: July 18th, 1999
Updated: July 1 , 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.

Amazon UK website
Order Niki's book or any other goods through this image link(left) and earn us commission towards the NM Convention 2009. 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.
News flash!
Exclusive article
Possible cure for actin mutation


Fundraisers wanted.
We are always needing fundraisers to help us organise small events
or collections. See our Fundraising page for easy ideas.


Can you help these fundraisers?
Memory of Matthew East
NM Support Group
NMC09


Hotel details
Fundraising Poster
Fundraiser Letter
Fundraiser Letter (pdf)
Introductions
 Research
Resources
 Miscellaneous

Dr. A. Beggs (June 17)
Dr. C. Wallgren-Pettersson (Sept. 13)
Prof. N. Laing (June 11 )
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 (June 30)
Therapies (Aug. 16)
Patient care (Sept. 13)
NM Support Group (Mar. 20)
NM Foundation (Jan. 19)

Retailers/Suppliers (Feb. 20)
Emergency lists for travel
Professional assistance (Dec. 1)
Equipment sale/swap/wanted/free (Mar. 13)
Ventilator agents
Drugs and supplements (Mar. 1)
Travel advice (Oct. 30 )

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

Meetings (Feb. 11)
1st NM Family Euro Weekend (June 20)
NM Convention 2004
NM Convention 2007
NM Convention 2009 (May 19)
NMC09 Poster (Mar. 17)
NMC09 Fundraising letter (Mar. 17)
NM Convention 2011 (details coming 2010)
Memorials (Apr. 15)

Majeda's page (Nov. 11)

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, Austria, Australia, 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, Uruguay, USA and Wales.

This page was last updated: July 1, 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, you 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.