Signing of a MOU between the ORDI and SJMCH
Rare Kidney Diseases
Rare Kidney Diseases

Alliance for Rare Kidneys

An Initiative to Support Children with Rare Kidney Diseases & their Families

Rare kidney diseases include more than 150 rare disorders, generally characterized by low prevalence and often with multifactorial causation; these disorders often have a major impact on kidney function and general health. Although individually rare, they collectively affect millions around the world. More than 150 rare kidney diseases are recognized; most are inherited.

These conditions may be due to genetic mutations, autoimmune disorders, or environmental causes and thus may present with several symptoms and complications.

Most of these disorders are inherited, having a genetic cause in 72% of instances and beginning in childhood in 70% of them. Depending on the type of disease involved, they may vary from cysts to scarring in the organs to metabolic imbalances.

ORDI Support Group Objectives
  1. To promote Rare Diseases as human rights priority through public awareness.
  2. To contribute towards 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.

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