The website with the people and the knowledge you need.

The only regulary updated website for nemaline myopathy

Born: July 18, 1999

Updated: September 29, 2015

NM Support Group is a member of Genetic Alliance UK

Email Chat Groups

Active Family Discussion Group
220+ families sharing advice and experiences
in a more private group.

Sporadic Late (Adult) Onset NM
Espana egroup por MN


Nemaline Myopathy Support Group
The very helpful worldwide network.
(Check OTHERS folder for response)
Nemaline Myopathy teens / young adults
Sporadic Late (Adult) Onset NM

Miopatia Nemalinica - (Portuguese, Italian, Spanish)
Nemalinmyopati NORDEN
Nemaiinikappaleet - Finland
(Japanese) - Facebook group

Miopatía Nemalínica España
Nemaline Myopathie Support - Deutschland
Nemaline Oz

Plant a tree for NMSG
Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.


Welcome Introduction (Oct. 27)
(June 15)
Francais (July 19)
Other languages (Dec. 21)

What is NM?

NM Family Contact Register (Jan 30)
Contact me to be added to the hundreds
of members from 53 countries around the world. I may know someone near you!

Meet the website creator
(Jan. 16)

Genetic testing (Nov. 29)
Dr. A. Beggs
(May 21)

Prof. N. Laing AO (June 9
Prof. K North (Oct 22)
Assoc. Prof. Ottenheijm (Nov. 19)
Dr. C. Wallgren-Pettersson (Nov. 19)
Research projects (May 22)
European NeuroMuscular Consortium (Nov. 19)
Science papers online (Feb. 8)

Jewish Genetics (Oct. 27)
CMD International Register (Feb. 27)
A Foundation Building Strength (Feb. 13)

Click here to take a genetics quiz!

Gene Express (Sept. 29)
The latest updates directly from the research teams as they are published.

Starting out with NM (May 4)
Beginners Guide to Explaining things
(Feb. 5)
Therapies & Personal Development (Jan.. 29)
Professional and medical contacts (April 29)
Patient care (April 29)
Pregnancy in women with NM (Dec. 28)

Webpage for SLONM (March 5)

Retailers/Suppliers (April 13)
Travel/Holiday/Insurance advice (July 21)
Emergency lists for travel
Drugs and supplements (Aug 30)
L-tyrosine (July 2)
NM Support Group (NMSG) (Mar. 20)
NM Foundation
(Aug. 25)

Videos (June 6)

Publications (Feb. 3)
Original NM Newsletter
Everybody's Different

Relaunched NM Newsletter


This page was last updated: September 29, 2015
© David McDougall. 1999-2015
Contact: All received emails will be answered. (Please quote Nemaline Myopathy in the subject line.)

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.