We are a patient advocacy group. Our mission is to make India aware of rare diseases and improve the quality of life of its warriors! We are currently working for one of rare disease, muscular dystrophy;  genetically inherited neuromuscular condition that primarily affects the skeletal muscles, also cardiac in few cases leading to progressive, predominantly proximal muscle weakness at presentation caused by a loss of muscle fibre.

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EDUCATING PATIENTS FOR DAILY MANAGEMENT OF RARE DISEASE

  • Requirement of dietary supplements by individuals.
  • Assistive devices required for Independent living.
  • Providing Physiotherapy :Physical endurance guidance.
  • Mental and Emotional well being support.

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INITIATING RESEARCH FOR MUSCULAR DYSTROPHY IN INDIA

  • Creating a data bank for Muscular Dystrophy.
  • Helping patients with proper genetic diagnosis.
  • Fundraising for research in India.
  • Forming a scientists and doctors advisory board.

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SPREADING AWARENESS FOR RARE DISEASES IN INDIA

  • Spreading awareness through social media.
  • Spreading awareness through hospitals.
  • Connecting to other patients advocacy group.
  • Connecting to other trusts, help create awareness.

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PROMOTING UNIVERSAL ACCESSIBILITY IN INDIA

  • Promoting accessible India campaigns.
  • Spreading awareness about it to various stakeholders.
  • Conducting access audits for public buildings.
  • Research work finding gaps in universal accessibility.

Muscular Dystrophy patient Registry for India

We at Ayushkama Foundation are aiming to develop Indian registry for Muscular Dystrophy patients. This patient registry collects information about patients who are affected by any form of Muscular Dystrophy

We are trying to fill the gap in information about individuals who are affected by a specific condition. Since In rare disease, they play an important role in the therapy development pathway.

Your Donation Will Make a Difference

Your generous donation allows us to fund the most promising projects in research labs; to bring scientists together to exchange ideas and collaborate; and to support a patient database to provide researchers a list of people to contact when clinical trials of promising therapies are available. Through your support, we can help patients and their family prepare for the future that can seem impossible.

Current Programs you can help for:

  • Physiotherapy training for Muscular Dystrophy
  • Nutrition program for Neuromuscular diseases.
  • Awareness campaigns for rare diseases
  • Genetic Diagnosis for undiagnosed warriors

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