Rare Disease Day 2023: rare is our reason

At Sobi, we're on a mission to transform the lives of people with rare diseases. Rare Disease Day provides us with an important reminder of the 300 million people currently living with a rare disease, as well as recognising the work of patient organisations and other stakeholders around the world working within the rare disease community. 

For Rare Disease Day this year, we are taking the opportunity to reflect on what serving the global rare disease community means for us and why patient centricity is so important in our daily work. Five of our colleagues with different roles and responsibilities share their stories on what makes them come to work every day and what putting the patient at the centre of our work means at Sobi.

Annalisa Adani, General Manager Italy, Greece, Malta, and Cyprus
"I really enjoy my job and leading people towards a better world where the patient is placed at the centre. For me, it is important to do something meaningful, something valuable, and that is to help our patients feel better." 

"Putting the patient at the centre means that I am committed to Sobi's continuous dialogue with the rare disease patient community. We cannot truly add value to patients if we do not listen closely to them. It's all about the patients and our mission is to help them find their inner voice, space, and strength to elevate their personal needs."

Konstatintin Bakaykin, General Manager CEER & Japan
"I work very closely with my team, which I consider my Sobi family. We have a shared goal to improve the lives of those who are affected by rare diseases - helping them to overcome the feeling of isolation as much as we can and bringing our medicines to complex markets where patients typically wait longer to access new therapies." 

"I feel a great sense of purpose in knowing that my time spent at work can contribute to creating a positive impact on the lives of our patients. When I come home and my son asks, "What did you do today, daddy?", to be able to say that I helped sick people gives me a lot of satisfaction."

Lydia Abad-Franch, Medical Affairs and Clinical Science
"I love my job because we do a lot to bring attention to rare diseases so that our patients can raise their voices. I have worked in hospitals for many years and have met these patients. I have many memories and have been through several dramatic family stories. So, having the opportunity to work for a company that focuses on this niche population motivates me. It is very rewarding to know that I am doing something meaningful every day."

"Putting the patient at the center is about being fully committed to developing the most innovative, effective, and accessible therapies for our patients. We do this by minimising time to diagnosis for patients, increasing funding for research in new therapies and raising the voice of patients to increase their inclusion in the community."

Uwe Froehlich, Legal & Compliance Europe and International
"Daily, we work to deliver specific therapies and find individually tailored solutions for people living with rare diseases. All employees are encouraged to reflect, exchange and express ideas that improve the situation for the patient. This is patient-centricity to me. Putting the patient at the center also means that the science behind the products we provide is considered as important as the partnership and the collaboration with patient organisations and healthcare providers. You cannot just look at research in isolation. The same goes for the commercial side. You must put the patient first to succeed."

Jameel Nazir, Patient Access and Community Engagement
"I go to work because I know that at Sobi we have a unique opportunity to make therapies available to as many patients as possible, with the potential of transforming their lives and the life of those who care for them."

"To be able to provide the best possible treatment, we need to understand the patients and their needs. This is something we work on every day at Sobi and why our approach is fundamental to us. Patients' insights and needs direct research and development and other parts of the organisation, to provide education, knowledge, and tools to better equip patients when discussing their options with their doctor. In the end we want to create the greatest possible impact for the patients."