“For over 30 years, it has been ADM’s mission to improve the quality of life for the people with neuromuscular diseases in Argentina. After winning this year’s STRIVE awards, we are overjoyed to be able to develop an online community which will continue to support and address the needs of the 1,600 Duchenne patients in our country.” – Santiago Ordoñez, President of Asociación Distrofia Muscular

For Duchenne muscular dystrophy patients and their families, living with a mobility-restricting rare disease can make it challenging to connect with others who share their experience. Without a strong sense of community, there are few opportunities for those impacted by Duchenne to socialize and exchange personal experiences, which can result in feelings of isolation and low self-esteem. A lack of a centralized community can also result in patients and their carers being less informed on the latest developments in Duchenne care and treatment. 

For over 30 years, the Asociación Distrofia Muscular (ADM) has aimed to improve the quality of life for Duchenne patients in Argentina. With funding from the STRIVE Award, ADM are in the process of developing an online platform for the Argentinian neuromuscular diseases community, particularly those with Duchenne and Becker muscular dystrophy. By building a platform that can be easily accessed though both a website and app, patients, families and healthcare providers can turn to the online community for support, advice, information and guidance. 

The primary objective of the online platform will be to promote and foster relationships between those impacted by Duchenne. As users are encouraged to share their personal experiences, ADM also plans to use the platform to identify inspirational patients who can act as positive role models in the online community. By sharing their own stories of living with Duchenne, these role models will inspire others to feel empowered to live the life they choose and not to feel restricted or limited by living with Duchenne.

Acting as a central gathering point for many Duchenne families in Argentina, the platform will also include an educational element by providing accurate scientific and medical information. In addition, ADM will use the platform to conduct social media research and use the insights gained to inform policy makers on the challenges and barriers patients with Duchenne continue to face. They are looking forward to the launch of the platform in January 2022.

“For over 30 years, it has been ADM’s mission to improve the quality of life for the people with neuromuscular diseases in Argentina. After winning this year’s STRIVE awards, we are overjoyed to be able to develop an online community which will continue to support and address the needs of the 1,600 Duchenne patients in our country.”

Santiago Ordoñez, President of Asociación Distrofia Muscular

Learn About STRIVE

Presentation of the 2020 STRIVE Award to ADM