Sh. Manohar Lal, Hon’ble Chief Minister, Haryana on 11.05.2023 announced monthly pension of Rs. 2750/- for the patients of Haryana domicile, suffering with Rare Diseases.
Ministry of Health & Family Welfare, Government of India has notified ‘National Policy for Rare Diseases, 2021’ for the management of patients having rare diseases, which is directed towards prevention, early detection and treatment of such diseases. The policy has provision of free treatment facilities for persons suffering with such diseases at designated ‘Centres of Excellence’. Presently, there are approx. 55 medical conditions/ diseases notified as Rare Diseases under the said policy.
| 1. Lysosomal Storage Disorders (LSDs) | 2. Mucopolysaccharoidosis (MPS) type I (severe form) |
| 3. Adrenoleukodystrophy (early stages), before the onset of hard neurological signs. | 4. Severe Combined Immunodeficiency (SCID) |
| 5. Chronic Granulomatous disease | 6. Wiskot Aldrich Syndrome |
| 7. Osteopetrosis | 8. Fanconi Anemia |
| 9. Laron’s Syndrome | 10. Tyrosinemia |
| 11. Glycogen storage disorders (GSD) I, III and IV | 12. Multiple liver adenomas |
| 13. MSUD (Maple Syrup Urine Disease) | 14. Organic acidemias. |
| 15. Fabry disease | 16. Autosomal recessive Polycystic Kidney Disease (ARPKD) |
| 17. Autosomal dominant Polycystic Kidney Disease (ADPKD) | 18. Phenylketonuria (PKU) |
| 19. Non-PKU hyperphenylalaninemia conditions | 20. Tyrosinemia type 1 and 2 |
| 21. Homocystinuria | 22. Urea Cycle Enzyme defects |
| 23. Glutaric Aciduria type 1 and 2 | 24. Methyl Malonic Acidemia |
| 25. Propionic Acidemia | 26. Isovaleric Acidemia |
| 27. Leucine sensitive hypoglycaemia | 28. Galactosemia |
| 29. Glucose galactose malabsorbtion | 30. Severe Food protein allergy |
| 31. NTBC for Tyrosinemia Type 1 | 32. Osteogenesis Imperfecta – Bisphosphonates therapy |
| 33. Prader Willi Syndrome | 34. Turner syndrome |
| 35. Noonan syndrome | 36. Cystic Fibrosis- Pancreatic enzyme supplement |
| 37. X-linked agammablobulinemia etc. | 38. Wilson,s Disease |
| 39. Congenital Adrenal Hyperplasia (CAH) | 40. Neonatal Onset Multisystem Inflammatory Disease (NOMID) |
| 41. Gaucher Disease (Type I & III) | 42. Hurler Syndrome [Mucopolysaccharisosis (MPS) Type I] (attenuated forms) |
| 43. Hunter syndrome (MPS II) (attenuated form) | 44. Pompe Disease (Both infantile & late onset) |
| 45. Fabry Disease diagnosed before significant end organ damage. | 46. MPS IVA before development of disease complications. |
| 47. MPS VI before development of disease complications. | 48. Cystic Fibrosis (Potentiators) |
| 49. Duchenne Muscular Dystrophy | 50. Spinal Muscular Atrophy |
| 51. Wolman Disease | 52. Hypophosphatasia |
| 53. Neuronal ceroid lipofuschinosis | 54. Hypophosphatic Rickets |
| 55. Atypical Hemolytic Uremic Syndrome (AHUS) |
| 1. All India Institute of Medical Sciences (AIIMS) Sri Aurobindo Marg, Ansari Nagar, Ansari Nagar East, New Delhi, Delhi-110029. |
| 2. Maulana Azad Medical College (MAMC) 2, Bahadur Shah Zafar Marg, Maulana Azad Medical College Campus, Balmiki Basti, New Delhi, Delhi-110002. |
| 3. Sanjay Gandhi Postgraduate Institute of Medical Sciences New PMSSY Rd, Raibareli Rd, Lucknow, Uttar Pradesh-226014. |
| 4. Postgraduate Institute of Medical Education and Research (PGIMER) Madhya Marg, Sector 12, Chandigarh- 160012. |
| 5. Center for DNA Fingerprinting & Diagnostics Inner Ring Rd, Survey Colony, Industrial Development Area, Uppal, Secunderabad, Telangana. |
| 6. King Edward (VII) Memorial Hospital and Seth Gordhandas Sunderdas Medical College Acharya Donde Marg, Parel, Mumbai, Maharashtra-400012. |
| 7. Institute of Post-Graduate Medical Education and Research SSKM Hospital Rd, Bhowanipore, Kolkata, West Bengal- 700020. |
| 8. The Centre for Human Genetics (CHG) in Indira Gandhi Institute of Child Health, (IGICH), Electronics City Phase 1, Electronic City, Bengaluru, Karnataka-560100. |
| 9. All India Institute of Medical Sciences Marudhar Industrial Area, 2nd Phase, M.I.A. 1st Phase, Jodhpur. |
| 10. Institute of Child Health and Hospital for Children Bhanumati, Rina Mandal Rd., Egmore, Chennai. |
| 11. SreeAvittamThirunal (SAT) Hospital& Government Medical College Thiruvananthapuram, Kerala. |
Financial support
Financial support, up to Rs. 50 Lakhs, is being provided to the patients suffering from any of the Rare Diseases, mentioned in the National Policy, for the treatment in any of the notified Centers of Excellence (CoE) as mentioned in National Policy for Rare Diseases, 2021.
National Portal
The annual cost of treating some rare diseases may exceed the amount allowed under the national policy, which is Rs. 50 Lakhs, and may exceed Rs. 1 crore. There is a provision for crowdfunding in such circumstances, and for the same reason, https://rarediseases.nhp.gov.in/ https://rarediseases.nhp.gov.in/, a digital portal for crowdfunding & voluntary donations for patients of rare diseases, has been devised. All the patients with rare diseases are listed on this portal by the centres of excellence.
General public is called upon to come forward and to donate for such management of such patients. Any individual patient may also be chosen for donation. Click Here