Organization for Rare Diseases India (Ordi)

ORDI ( www.ordindia.in ) is a national umbrella organization representing the collective voice of all patients with rare diseases in India, set up as Read more a section 25 non-profit company in India. Vision: A Better Life for People with Rare Diseases. Mission: ORDI’s mission is to be the strong united voice for all rare diseases in India, to reduce inequalities and ensure that people living with rare diseases have access to the same resources as any other population Objectives: 1.      To promote Rare Diseases as human rights priority through public awareness. 2.      To contribute towards the development of Public Policy and take part in implementation, such as Rare Disease Policy and Orphan Drug Policy. 3.      To collaborate with advocacy organizations from India, and people living with rare diseases; working jointly to connect them with national & international forums such as NORD, EURORDIS, RDI, Global gene, UDN, etc. 4.      To accelerate diagnosis and treatment options for patients with rare diseases through public-private partnerships, and by advocating mandatory New Born screening· 5.      To Facilitate & encourage Clinical Trials, Research & Orphan drug development activities. Rare diseases are diseases which affect a small number of people compared to the general population and specific issues are raised in relation to their rarity. They affect more people than the name suggests. More than 50% of Rare Diseases patients are children; sadder still, most of them die before their fifth birthday due to lack of appropriate medical intervention. The scenario worsens due to lack of early diagnosis along with expensive treatment options, which pose major hurdles in rare disease management. 1.      It is estimated that 70 million Indian patients are affected by rare diseases 2.      Anywhere from 1: 5,000 to 1: 10,000 Indian patients have one of the 7,000 types of rare diseases 3.      The stark reality is that 1:20 Indian is afflicted by a rare disease. Today, many Rare Disease Patients’ parents shell out most of their earnings on routine check-up and treatments. This is because, the genetic disorders come with regular treatment and follow ups. Our Other Activities: 1.      Race for 7: Awareness on the Rare Diseases is the key parameter to give the knowledge on these diseases. Over the last 7 consecutive years. This event is a Run/Walk/Bicycle Ride raising the awareness to the common public. Over the years, there are close to 40,000 participants have attended this event. Race for 7, is an initiative to create awareness among the general public across India over 22 cities & at 2 overseas cities. 2.      Rare Disease Care Coordination Center (RDCCC): Finding patients of Rare diseases and giving families hope through expert advice for potential treatment and lifestyle enhancement. This set is a holistic approach of managing the Rare Disease patients with all stakeholders involved. We have a center running at IGICH Bangalore since 2016 where close to 150 patients are getting treated. We are also collaborated with Bangalore Baptist Hospital for Neuromuscular clinic for Rare Disease Patients. 3.      ORDI has advocated policies on Rare diseases at the Central Government level to get free treatment for costly rare diseases in India.