Dear Members
Greetings
Rare Disease are the diseases which have a
very low prevalence in the general population. Because of this, patients
suffering from rare diseases often face challenges in their diagnosis, and
subsequently in their treatment. Although taken individually, these diseases
may have a low prevalence, yet taken together as a group, rare diseases
constitute a significant burden on the health services. Recently in India,
National Policy for Rare Diseases, 2021 was formulated and released.
Unfortunately, dermatologic rare diseases find little mention in the policy
document.
IADVL Cutaneous Rare Disease (I-CuReD)
Registry in an initiative by Special Interest
Group (SIG) Pediatric Dermatology under the aegis of IADVL Academy and EC to
bring together the plethora of dermatological rare diseases under one
platform. Patient registries may serve as appropriate
tool to aid in understanding the epidemiology and natural history of cutaneous
rare diseases and assess their long-term outcomes.
All IADVL members are invited to voluntarily
and actively register their patients with rare diseases
(published/unpublished) using the following link
https://forms.gle/ovNgfvfYhJPJjQjV9
Once you enter the patient details in the
above-mentioned Google form, you will receive an acknowledgement of the same
(kindly check your spam folder in case you don't receive the acknowledgement in
your inbox). This link will soon be made available on our website also.
In case any member of IADVL wishes to facilitate
the confirmation of clinical Diagnosis through IADVL funded projects, one may
contact SIG Pediatric Dermatology (sigpedderm@gmail.com)
Best regards
Dr Rahul
Mahajan Dr
Maitrayee Panda
Coordinator,
SIG Pediatric Dermatology
Convener, SIG Pediatric Dermatology
Dr Lalit
Gupta Dr Rashmi Jindal
Chairperson, IADVL Academy
Convener, IADVL Academy
Dr Vijay
Zawar
Dr Dinesh K Devaraj
President, IADVL
Hon. Secretary General, IADVL