In a first, Indian Organization for Rare Diseases has initiated setting up of a Patient Support Group for Congenital Ichthyosis with all key stakeholders – patients, caregivers & patients’ kin.
How does Congenital Ichthyosis impact a patient? It is a rare genetic skin disease; wherein affected patients present with an abnormal skin barrier leading to excessive ‘fish-like scales’ over the entire body throughout their life. This results in significant psychosocial distress, among other complications.
The inheritance pattern can be dominant or recessive, X-linked or autosomal, and it is estimated that around 300 babies are born with moderate to severe ichthyosis every year. While there is no cure for this disease yet, significant efforts are undertaken by healthcare professionals and research communities across the world to improve the diagnostics and management of such patients.
That is the Science part of it – But we, as humans, what can we do? “Support,” for what it is, better than we are coming together, rooting, watching each other heal, and grow!
To make this amazing forum come forth, the Indian Organization of Rare Diseases welcomes all ichthyosis patients, parents, and caregivers to come front, join, share information, and help each other in this united battle against this disease.
If you know a Congenital Ichthyosis patient or a caregiver dealing with them, please do register by filing up this Patient Support Group form for Congenital Ichthyosis & share your expertise with others.
