Helpful Resources & Links
International Congenital Muscle Disease Webinar on Scoliosis Management
The Information Point for Centronuclear and Myotubular Myopathy
A Patient Guide to CoughAssist
Dr. Atala on PBS "Amniotic Fluid Yields New Type of Stem Cell"
"Myotubular Trust" A European foundation
Myotubular Myopathy Resource Group
Dr. Anthony Atala’s Laboratory
Centronuclear and Myotubular Myopathy Information Point
"The Catastrophic Illness in Children Relief Fund" for Mass Residents Only
The muscular dystrophy association provides general information about various topics related to neuromuscular conditions.
MUMS - National Parent-to-Parent Network
MUMS is a national parent-to-parent organization for parents or care providers of a child with any disability, rare or not so rare disorder, chromosomal abnormality or health condition.
MUMS' main purpose is to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition.
Through a database of over 17,000 families from 52 countries covering over 3,000 disorders, very rare syndromes or conditions can be matched
NORD: National Organization for Rare Disorders
National Organization for Rare Disorders
55 Kenosia Avenue, PO Box 1968
Danbury, CT 06813-1968
203-744-0100
Tollfree: 800-999-6673 (voicemail only)
TDD Number: 203-797-9590
203-798-2291 (fax)
Email: orphan@rarediseases.org
The National Organization for Rare Disorders (NORD) is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD maintains three searchable databases and an alphabetical index of disease names.
"Those that are weak often become strong in the presence of the bold."
Mike Murdock