Hope for rare skin disorder patients as AIIMS pushes for policy inclusion
national policy for rare diseases, which currently covers 63 conditions, is set to be expanded to include certain rare dermatological conditions, reported TOI.
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The policy, which has not yet included dermatological disorders, is being reviewed to incorporate three specific conditions: epidermolysis bullosa (EB), xeroderma pigmentosa (XP), and ichthyosis.
According to the report, experts from AIIMS are currently assessing these conditions, and the Indian Council of Medical Research (ICMR) has shown renewed interest in collaborating on this initiative, signalling progress toward greater recognition and support for these patients.
Dr. Madhulika Kabra, professor in genetics at AIIMS Delhi and member of the National Rare Diseases Committee (NRDC), confirmed that discussions are underway to include these conditions in the national policy for rare diseases, said TOI in its report. AIIMS records indicate that approximately 200 families are affected by EB, a disorder that causes extremely fragile skin prone to blistering from minimal contact, often resulting in painful sores and blisters.
The condition, which can also affect internal areas such as the mouth and genitals, requires lifelong care, with treatment costs around Rs 20,000 per month.
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