World Duchenne Day

Context:

The Department of Empowerment of Persons with Disabilities (DEPwD) observed World Duchenne Muscular Dystrophy (DMD) Day on 7th September 2025 with the theme “Family: The Heart of Care.”

Duchenne Muscular Dystrophy (DMD)

DMD is a rare, progressive genetic disorder leading to muscle degeneration and weakness.
It primarily affects children and gradually impacts mobility, respiration, and cardiac functions.
There is no complete cure, but early detection, physiotherapy, and supportive care improve quality of life.

Awareness and Institutional Role

Awareness programmes were organised by SVNIRTAR (Cuttack), NILD (Kolkata), ISLRTC (New Delhi), and various Composite Regional Centres (CRCs).
Activities included webinars, community outreach, and awareness drives in universities and public spaces.
These initiatives emphasisedearly diagnosis, family support, and inclusion of persons with DMD.

Policy and Social Dimensions

Observance aligns with India’s commitment under the Rights of Persons with Disabilities Act, 2016, which recognises muscular dystrophy as a specified disability.
Promotes social inclusion, accessibility, and empowerment for affected families.
Awareness drives help integrate DMD concerns into the larger disability welfare framework.

Rights of Persons with Disabilities (RPwD) Act, 2016

Background & Context

Enacted to implement UNCRPD (2007) obligations.
Replaced the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995.
Emphasisesdignity, equality, non-discrimination, and full participation of PwDs in society.

Key Highlights

Expanded Definition
- Recognises21 disabilities (up from 7 earlier) including cerebral palsy, autism, thalassemia, haemophilia, acid attack victims, multiple sclerosis, etc.
- Scope includes mental, intellectual, sensory, and neurological conditions.
Rights Guaranteed
- Right to equality, dignity, and life without discrimination.
- Protection from abuse, cruelty, inhuman treatment, and exploitation.
- Right to home, family life, reproductive rights, and political participation (voting, contesting elections).
Benchmark Disabilities
- Persons with ?40% of a specified disability, certified by competent authority.
- Eligible for reservation, concessions, and social security benefits.
Guardianship Provisions
- Limited guardianship: Shared decision-making between guardian &PwD, respecting PwD’s will.
- Plenary guardianship: Only in exceptional cases where repeated support is required.
Social Security & Welfare
- Mandates schemes/programmes for rehabilitation, skill development, and independent living.
- Government to ensure accessibility in transport, ICT, public buildings, and services.
Institutional Mechanisms
- Chief Commissioner & State Commissioners: Monitor implementation and safeguard rights.
- Advisory Boards at central and state level for policy formulation.

Special Provisions

Education & Employment:
- At least 5% reservation in government higher educational institutions.
- 4% reservation in government jobs.
Political Rights: Accessibility in voting & electoral processes.
Punitive Provisions: Penalties for offences against PwDs including discrimination, neglect, and abuse.