団体名:          Dimus Chile (Asociación de Distrofias Musculares de Chile)

ウェブサイト            https://dimuschile.cl

FACEBOOK        https://www.facebook.com/DimusCL

インスタグラム      https://www.instagram.com/dimuschile

WHAT LGMD  SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: 

As an organization, we do not specialize in any specific subtype. We welcome patients with any muscular dystrophy in adulthood, except for Duchenne.

IS THERE AN LGMD-SPECIFIC REGISTRY? IF SO, WHRE CAN PEOPLE ACCESS IT?

We do not specialize in a specific subtype, but we do have a patient registry where we keep track of our members and their type of Muscular dystrophy.

IS YOUR ORGANIZATION A NON-PROFIT?         

Yes, DIMUS Chile is a non-profit civil association.

組織創設のきっかけ?

The organization was formed by a group of LGMD patients who had never met others with the same condition. Initially, it was created as a space to share experiences and build a community. Over time, this group grew and evolved into what it is today.

WHAT IS YOUR ORGANIZATION’S MISSION?

To promote, protect, and represent the interests of adults with muscular dystrophies and their families in Chile through comprehensive and multidisciplinary support.

WHAT SERVICES DOES YOUR ORGANIZATION PROVIDE?

Our organization provides social, medical, and emotional support to adults with muscular dystrophy, excluding those with Duchenne muscular dystrophy. We offer information, disease awareness, psychological counseling, and online physical therapy, depending on available resources and volunteers, among other services. Additionally, we organize awareness activities and events to promote access to treatments and improve the quality of life of our members. We also work on building support networks and collaborate with academic and professional institutions to offer specialized resources and services.

あなたの組織が最も誇りに思っていることは何ですか？

Our organization is proud to have created a strong and committed support network for adults with muscular dystrophy. What started as a small group of patients has now become an active community that provides visibility, support, and resources to improve the quality of life of our members. We are also proud of our collaboration with academic and professional institutions, which allows us to offer specialized care services, and the positive impact we have had in raising awareness about neuromuscular diseases in our society.

あなたの組織について、世間に何を知ってもらいたいですか？?

We want the world to know that our organization works to bring visibility to muscular dystrophy in adulthood, a condition that is often overlooked or unknown. We aim to raise awareness about the importance of recognizing and valuing people with these conditions, advocating for their rights as individuals with disabilities and full members of society. Our goal is to improve the quality of life of those living with muscular dystrophy by ensuring they have access to the resources, support, and treatments necessary for their well-being.

HOW CAN PEOPLE SUPPORT YOUR ORGANIZATION?

People can get involved by joining our community as volunteers, participating in our events and activities, and helping to spread information about adult muscular dystrophies. They can also support us through donations, sharing our message on social media, or collaborating with us on research and advocacy efforts. Additionally, they can contribute by offering their expertise in areas such as healthcare, legal rights, or fundraising, helping us continue our mission of improving the quality of life of those living with muscular dystrophy.

貴団体に連絡する最善の方法は何ですか？

Through our social media channels, mainly Instagram, there is also a link to our WhatsApp.

https://www.instagram.com/dimuschile/