On 19th July 2024 Aniridia Europe was invited to participate to the webinar “Hope for Rare Eye Diseases” organised by the team of the SCEH (Dr Shroff’s Charity Eye Hospital) in New Delhi, India, as a CURED initiative. CURED is the Centre for Unknown and Rare Eye Diseases, founded in India in the last years with the objective of reducing the diagnosis time for patients with rare eye diseases, providing the highest standards of care and psychosocial support and promoting research initiatives in the same field.
The speakers and the SCEH faculty members that participated to the webinar with their affiliations and specialities can be found in the enclosed flyer.
Here below you can read the report with the highlights of the webinar, prepared by Ms. Ria Sachdeva, Genetic Counselor at the SCEH.
On 19 July 2024 CURED held a one of its kind webinar on Hope for Rare Eye Diseases (REDs) – ‘Hope’ being the word of emphasis.
One might find oneself alone in the journey of facing a rare disease, as a patient, a clinician or a researcher. However, the captivating discussions held during the webinar reassured individuals from all walks of life that they are not alone.
The power of concerted efforts shone through the meeting – Prof Miguel Seabra vastly discussed about his initiatives at the Champalimaud Centre for the Unknown to develop low cost gene therapy for REDs, the challenges he faces and his future goal to form an international consortium of specialised individuals working on REDs. Prof Neil Lagali updated the audiences about the extensive research being carried out for Aniridia in Europe and highlighted the importance of researchers not only working closely with clinicians but also advocacy and support groups to provide holistic care to patients. Ms Barbara Poli updated us about how the Aniridia Europe network has grown over time starting from national initiatives to now having country specific support groups all around Europe and the formation of a Federation. The importance of having educational conferences and collaborative display of work has helped the organisation grow as more and more clinicians and scientists learnt about the advocacy groups. Mr Prasanna Shirol highlighted the status of rare diseases in India and why many times non-syndromic rare eye diseases could be neglected. He also broadly updated us about the status of initiatives in rare diseases in India and the role support groups are playing in the lives of patients here. We are grateful to the panellists for their valuable perspective and would like to thank them for their participation.
We are humbly moved by the participation of two patients in this webinar – Dr Seema Mane, an ophthalmologist and a SJS patient herself, and Mr Madhuresh Shukla, father of a retinoblastoma patient treated at SCEH. Both Dr Seema and Mr Shukla shared their heart warming journey as a patient and family member of a patient; how they overcame the big and small obstacles in life and rose above adversity.
We, the team at Dr Shroff’s Charity Eye Hospital, learnt a lot about what is happening around the world as well as our own country, shared our experiences as a tertiary eye care hospital and have planned to collaborate towards some key elements of rare disease care with our international delegates.
This enlightening webinar was envisioned by Dr Virender Singh Sangwan in March 2024 and he had been slowly putting the pieces of the puzzle together for us with respect to its direction and formation. He has been the force behind bringing this great community of speakers together. Dr Shailja Tibrewal and Dr Abha Gour have helped with the planning of the event, from time management, announcement designs to flow design.
A special thanks to the Studio4 team – Mr Manish, Ms Shilpi and Ms Moushumi who have very meticulously laid out announcement plans, prepared post layouts, encouraged participation by the right focus group audiences based on the theme of the webinar and were always a phone call away. A shout out to the Communications team at SCEH with a special mention to Himanshu and Mr Manish Lal for shooting our patient stories and bringing all the social media announcements out on schedule. Without your inputs we would have felt ourselves at a loss organising the event.
Many thanks to the IT team at SCEH, Zafar and Mr Vikas who looked after the registration processes and enabled a smooth run throughout the webinar.
Last but not the least, we would like to extend our gratitude towards our mentors, seniors and colleagues at SCEH for your support and faith, and standing behind us in this endeavour to help individuals with REDs and its awareness initiatives.
The webinar was well received thanks to united efforts of all involved.
We look forward to keep bringing more informative and diverse forums to you, and increased participation from our home team towards REDs.
On behalf of Team CURED
Ria Sachdeva
MSc Human Molecular Genetics
Genetic Counselor Level II
PhD Scholar
Dept of Ocular Genetics & CURED
Dr Shroff’s Charity Eye Hospital