Synonyms: BICD2-related lower extremity-predominant autosomal dominant proximal spinal muscular atrophy with contractures | SMALED2
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version March 2026
Newly diagnosed with
BICD2-related autosomal dominant childhood-onset proximal spinal muscular atrophy?
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Advocacy Organizations
Association Aux Pas du Coeur – Côte d’ivoire
Our organization wants to raise awareness and recognition of rare diseases in Ivory Coast. Our mission is to: Raise awareness and campaign to help with the diagnosis and free therapeutic care of patients. Request and/or contribute to actions relating to the training of the medical profession to be able to make a final diagnosis and ensure continuous monitoring of patients easily.
Fighting for Kaiden Foundation
The Fighting for Kaiden Foundation is a non-profit organization committed to enhancing the lives of those struggling with Spinal Muscular Atrophy (SMA) on multiple fronts. Directly, we strive to raise awareness of the disease on the local, regional and national levels. Our foundation provides need-based financial support to affected families for equipment and travel. We understand the value of peer support and organize support groups and information for SMA affected families in our area. We provide directed donations for medical research in addition to medical equipment and services for SMA patients across the country. Our goals are driven by our devotion to improving the lives and finding a cure for those with SMA.
Friends of Be an Angel
"Friends of Be an Angel" is a humanitarian non-profit organization that provides aid and evacuation assistance to vulnerable people in Ukraine. The organization focuses on providing essential supplies, performing medical evacuations with the focus of children with rare diseases, and offering mental health support, particularly for children affected by the war.
Fundacion Powerchair Football Argentina
To develop Powerchair Football in Argentina in order to integrate people with motor disabilities (SMA, Duchenne muscular dystrophy, Achondroplasia, Rare Diseases) into sports practice and to promote their social inclusion, based on empowerment, independence, and the creation of new bonds and friendships.
Jett Foundation
Jett Foundation empowers people and families impacted by Duchenne muscular dystrophy through the development of transformative programming, educational opportunities, and ongoing support for every stage of a Duchenne journey.
Neuromuscular Disease Foundation
The Neuromuscular Disease Foundation's (NDF) mission is to enhance the quality of the lives of people living with GNE Myopathy (also known as HIBM) through advocacy, education, outreach, and funding clinical research focused on treatments and a cure.
SMA Philippines Organization Inc.
Driven by the belief that no one gets left behind, we are dedicated to enhancing the lives of individuals affected with spinal muscular atrophy (SMA) through advocacy, education, and support. Our goal is to raise awareness, improve access to essential care and resources, advocate for equitable treatment opportunities, and champion the rights of individuals with SMA.
SPEAK Trust
SPEAK Trust is a non profit organization committed to address public health inequities, gender based violence, human rights through mass awareness, service delivery, capacity- building initiatives, research and advocacy.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.