Who Are We?
Lama2 India foundation has been formed by a group of socially conscious renowned people with a mission to advance research towards treatment for the Lama2 Congenital Muscular Dystrophy and empower those living with CMD through engagement and support of our community.
Lama2 India comprises a group of Indian Patients who have rare genetic disorders defined by muscle weakness at or soon after birth. Mutations in one of more than 30 genes cause muscle tissue to break down faster than the body can repair it. The said disease is named as Lama2 Congenital Muscular Dystrophy (Lama2-CMD), also known as Merosin-Deficient Muscular Dystrophy (MDC1A)
We have joined hands with different associates and collaborators concerned with this disease and took an initiative forward by forming a Lama2 India foundation.
We are committed and dedicated to advancing research in India, improving care standards, and empowering families affected by LAMA2-CMD.
We call upon you to join us in our journey to create a brighter future for LAMA2 – CMD patients filled with public awareness, support, collaboration, and dedication.
The Website
Our Aim
Our main aim is to advance awareness and research for LAMA2-CMD here in India as well as internationally and to directly to lend support for patients and families of Lama2 CMD by providing relevant information and resources.
By including the patients and families, and by collaborating with the clinicians, researchers and members of the biotech industry involved with LAMA2-CMD around the world, we aim to accelerate the road to therapy in a truly united and collective global effort.
A patient diagnosed with CMD may have a variety of neurological and physical impairments, including the inability to walk, respiratory weakness, scoliosis, joint contractures, feeding and cardiac complications, and for some, profound cognitive impairment. There are currently no FDA approved treatments for CMD.
Our Objectives
Together, we are dedicated towards achieving the following goals:
- 1
- Increase Awareness among Educated medical peers about LAMA2-CMD to facilitate early diagnosis and appropriate management.
- 2
- Collaborate with multidisciplinary teams to enhance care standards and treatment options. Accelerating the path to CLINICAL STUDIES and TRIALS and supporting SCIENTIFIC RESEARCH.
- 3
- Help us to start research on this disease here in India. Participate in clinical trials, share insights, and contribute to global research efforts.
- 4
- To request researchers for their support to shorten the research period so that 21-year journey can be completed into 2 years.
- 5
- To Provide accurate information and EDUCATION to the LAMA2-CMD community regarding latest developments about research & Treatment.
- 6
- Help us in building a patient community over here in India. India with a population of over 140+cr, we are only able to find just 50 patients so far. Thus, creating an Indian PATIENT REGISTRY and supporting the interoperability between NATIONAL REGISTRIES to facilitate patient identification and recruitment for clinical trials.
- 7
- Providing SUPPORT and maintaining active networks allowing patients, their families and the scientific community to connect and share, including with countries not yet organised with dedicated patients associations in Europe.
- 8
- Health Ministry recently prioritized 13 rare diseases with low prevalence. How can we get LAMA2 prioritized?
- 9
- More exposure towards awareness of advance therapies about physiotherapy, aqua therapy, TMR (Total motion release pediatrics therapy) TOTs and other therapies.