New Delhi: Enabling patients to avail financial assistance for treatment, the Union Health Ministry has included 6 rare diseases including Laron’s syndrome, Wilson’s disease and hypophosphatemic rickets among others into various groups of disorders under the National Policy for Rare Diseases (NPRD), 2021.
The move comes based on the NPRD, launched in March, 2021 for the treatment of rare disease patients by categorising the diseases into three groups.
According to an office memorandum released by the ministry recently, the six new diseases, after being reviewed by the Central Technical Committee for Rare Diseases (CTCRD), Directorate General of Health Services (DGHS) based on updated scientific data, have been included under the following groups of disorders identified and categorized by experts based on their clinical experience:
Group 1: Disorders amenable to one-time curative treatment:
i. Laron’s Syndrome
Group 2: Diseases requiring long term / lifelong treatment having relatively lower cost of treatment and benefit has been documented in literature and annual or more frequent surveillance is required:
(b) Disorders that are amenable to other forms of therapy (hormone/ specific drugs):
i. Wilson’s Disease
ii. Congenital Adrenal Hyperplasia (CAH)
iii. Neonatal Onset Multisystem Inflammatory Disease (NOMID)
Group 3: Diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost and lifelong therapy:
i. Hypophosphatic Rickets
ii. Atypical Hemolytic Uremic Syndrome (AHUS)
The financial assistance to the patients suffering from these rare diseases shall be provided as per the provisions envisaged under the NPRD, 2021 and guidelines and procedures issued to all Centres of Excellence (CoEs).
Under the Policy, the provision for financial support of up to Rs 50 lakhs to the patients suffering from any category of the rare diseases and for treatment in any of the Centre of Excellence (CoE) mentioned in NPRD-2021, outside the Umbrella Scheme of Rashtriya Arogaya Nidhi.
Also Read: 50 Lack Financial Aid For Rare Disease Patients: Union Health Ministry
In order to receive financial assistance for treatment of rare disease, the patient of the nearby area may approach the nearest Centre of Excellence to get him assessed and avail the benefits. The MoHFW has been identifying CoEs for diagnosis, prevention and treatment of rare diseases.
The NPRD, 2021 has provisions for promotion of research and development for diagnosis and treatment of rare diseases; promotion of local development and manufacture of drugs and creation of a conducive environment for indigenous manufacturing of drugs for rare diseases at affordable prices.
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