KATHMANDU, FEBRUARY 28

Rare Skin Disease Nepal (RSDN) organized a program in Kathmandu to commemorate World Rare Disease Day, centered on the theme "Rare Skin Diseases: Paradoxically Common."

The event aimed to raise awareness and advance the collective journey, marking a significant stride in enhancing understanding among health practitioners regarding rare diseases, as well as fostering knowledge, sharing insights, and inspiring action to achieve true health equity among the 300 million people affected by these rare conditions.

Noteworthy dignitaries joined both virtually and physically to offer invaluable insight, knowledge, and support, underscoring the commitment to a world where no one faces the challenges of rare diseases alone.

Connecting virtually from Singapore, Dr. Ritu Jain, President of DEBRA International, Vice-President at Globalskin, and Board of Director at Rare Disease International, emphasized the importance of patients sharing their challenges and urged collaboration among various stakeholders to address patient concerns.

Dr. Niraj Parajuli, a senior consultant at Bir Hospital, stressed the necessity for effective insurance schemes to alleviate the financial burden on patients requiring expensive medications.

Similarly, Professor Dr. Dedee F. Murell from the University of New South Wales, Sydney, Australia, delivered a virtual presentation on the effective management of Epidermolysis Bullosa (EB) in resource-constrained countries like Nepal, highlighting the difficulties in managing EB patients and sharing insights that could aid Nepali doctors in patient management.

Likewise, Dr. Prajwal Pudasaini, Registrar at Civil Service Hospital, emphasized the psychological aspect of rare skin diseases, highlighting the profound impact on patients and their families.

Dr. Julio Cesar Salas-Alanis, Founding President of DEBRA Mexico, shared his experiences encountering Genodermatoses in Mexico, rare skin diseases, connecting virtually from Mexico. While Dr. Pratima Pudel, Clinical Research Fellow at Birmingham Women's and Children's NHS Foundation Trust in the UK, presented findings relevant to her Nepali counterparts.

During the occasion, one of the patients successfully treated for dermatitis herpetiformis, shared her harrowing experience of going undiagnosed for years before finally receiving a successful diagnosis at Bir Hospital's skin department.

In closing remarks, Dr. Saraswoti Neupane Sharma, President of SODVELON, expressed gratitude to all participants for their involvement, stressing the challenges of managing rare diseases due to high costs and limited diagnostic availability, and emphasizing the need for increased financial support and collaboration to effectively address these issues and enhance support for patients with rare skin diseases.

The program was chaired by Dr. Mahesh Shah and Professor Dr. Rushma Shrestha, with Dr. Bidhi Regmi serving as the event host.