 bill no 125 of  2017 the rights of persons with disabilities (amendment) bill, 2017 byshrimati poonam mahajan , mp a billfurther to amend the rights of persons with disabilities act, 2016be  it enacted by the parliament in the sixty-eighth year of the republic of india as follows:—short title and commencement1 (1) this act may be called the rights of persons with disabilities (amendment)act, 20175(2) it shall come into force on such date as the central government may, by notificationin the official gazette, appoint49 of 20162 in the schedule to the rights of persons with disabilities act, 2016 after para 4, thefollowing para shall be inserted, namely:—amendment of the schedule10 15"4a epidermolysis bullosa that is, a group of disorders in which congenitalmalformation caused by genetic conditions causes the skin to be very fragile and to blister easily forms of epidermolysis shall include:(i) epidermolysis bullosa dystrophica;(ii) epidermolysis bullosa simplex; (iii) epidermolysis bullosa letalis" statement  of  objects  and  reasonsclause (zc) of section 2 defines specified disability in term of disabilities mentioned in the schedule to the rights of persons with disabilities act, 2016 it has been observed that many children in india are suffering from various types of epidermolysis bullosa which is a congenital malformation that cause the skin to be very fragile and to blister easily blisters and skin erosions form in response to minor injury or friction thereby requiring rigorous skin care the 10th revision of the international statistical classification of diseases and related health problems classifies epidermolysis bullosa into three types namely epidermolysis bullosa dystrophica, epidermolysis bullosa simplex and epidermolysis bullosa letalisdepending on the form of condition, symptoms include alopecia (hair loss), blisters around the eyes and nose, blisters in or around the mouth and throat causing feeding problems or swallowing difficulty, blisters on the skin as a result of minor injury or temperature change, blistering that is present at birth, dental problems such as tooth decay, hoarse cry, cough or other breathing problems and nail loss or deformed nailschildren in india afflicted with epidermolysis bullosa have been subjected to prejudice and various forms of discrimination moreover, they are deprived of educational opportunities, thereby violating the united nations convention on the rights of persons with disabilities the bill seeks to safeguard dignity and grant equality of opportunity to all those children who are suffering from various strains of epidermolysis bullosahence this billnew delhi;poonam mahajanjuly 3, 2017 annexure the rights of persons with disabilities act, 2016 (49 of 2016) the schedule[see clause (zc) of section 2] specified disability    4 disability caused due to—(a) chronic neurological conditions, such as—(i) "multiple sclerosis" means an inflammatory, nervous system disease in which the myelin sheaths around the axons of nerve cells of the brain and spinal cord are damaged, leading to demyelination and affecting the ability of nerve cells in the brain and spinal cord to communicate with each other;(ii) "parkinson's disease" means a progressive disease of the nervous system marked by tremor, muscular rigidity, and slow, imprecise movement, chiefly affecting middle-aged and elderly people associated with degeneration of the basal ganglia of brain and a deficiency of the neurotransmitter dopamine (b) blood disorder—(i) "haemophilia" means an inheritable disease, usually affecting only male but transmitted by women to their male children, characterised by loss or impairment of the normal clotting ability of blood so that a minor would may result in fatal bleeding;(ii) "thalassemia" means a group of inherited disorders characterised by reduced or absent amounts of haemoglobin;(iii) "sickle cell disease" means a hemolytic disorder characterised by chronic anemia, painful events, and various complications due to associated tissue and organ damage; "hemolytic" refers to the destruction of the cell membrane of red blood cells resulting in the release of hemoglobin   ———— a billfurther to amend the rights of persons with disabilities act, 2016————(shrimati poonam mahajan, mp)gmgipmrnd—991ls(s3)—20-07-2017