Nemaline Myopathy Support Group

Resources

Professional and medical contacts

AUSTRALIA - MIDDLE EAST - WORLDWIDE

Having your child diagnosed with nemaline can be a devastating time. It is important to discuss future health and care issues. The following people can help advise you. All names below are given by families who have dealt with the people listed. Please advise me if you find these details out of date.

Australia

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • A new spread sheet of contacts has been created and maintained in Australia.
    Please contact davidmcd_@hotmail.com for details. (Jan. 2015)
  • Dr. Kornberg in RCH, Melbourne
    He is the Chief of Neurology. (2010)
  • Australasian Neuromuscular Network
    Genetic testing availability in Australia. Read also about a study of nemaline myopathy by Dr. Sandaradura. Dr. Sandaradura can also assist you if you are interested in donating spare tissue specimens to the Australian Biospecimen Bank. This is where tissue is stored from those with neuromuscular disease for future research use in Australia and New Zealand. Only available for resident in Australia and New Zealand. Australian National DMD Registry and a list of Muscular Dystrophy Associations (2014)
  • Prof. Kathryn North is a research scientist in Sydney (Jan. 2014)

Middle East

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

Worldwide

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • http://www.doctorbabel.com/
    Create a simple medical record online and translate it accurately into many languages. Useful for holidays. Can help foreign medical professionals understand your own history and requirements.
    Featured in Muscular Dystrophy Campaign Scottish Newsletter. (2007)
































Plant a tree for NMSG

image

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

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
Learn more »»