9 SMA Organizations to Know About


by |

Share this article:

Share article via email

Spinal muscular atrophy (SMA) is a neuromuscular disorder that causes muscle wastage and a loss of motor neurones. There are organizations all over the world that provide care and support to patients, along with their family members and caregivers.

MORE: Seven support care areas which can help patients with SMA 

Here’s some information about organizations around the world that have been recommended by the SMA Foundation:

United States
SMA Foundation: The SMA Foundation was first established in 2003 by parents of a child with SMA. They focus on funding research, and serve as an information hub for those affected by the condition.

Fight SMA: This group dedicates themselves to investing in research, with the hope of finding a cure. They also offer direct support to families.

Gwendolyn Strong Foundation: This foundation offers research grants to universities that are trying to find a cure for SMA and learn more about the disease.

Miracle for Madison and Friends: This organization is dedicated to funding research. Their website is full of useful information on cure updates, research and merchandise.

MORE: Caring for children with SMA, what the experts recommend

EURORDIS: This group represents 761 patient organizations in 68 countries. Their aim is to build a European community of patient organizations and those living with the disease, and to be their voice across Europe.

SMA EUROPE: This umbrella group represents 13 patient and research organizations in 13 different European countries. Their main goals are to promote patient care and speed up SMA research pathways.

TREAT-NMD: This group aims to ensure that new therapies reach patients as quickly as possible, with the objective of establishing best practice care for neuromuscular patients worldwide.

United Kingdom
SMA Support UK: This charity provides support to anybody affected by SMA. They aim to improve access to new treatments, raise awareness and fund research initiatives.

The SMA Trust: Dedicated to funding SMA research, the SMA Trust is currently funding 75 percent of charity-based SMA research in the U.K.

MORE: How is SMA diagnosed? 

SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.