Meet two of the beating hearts behind CRDN
The last day of February each year is Rare Disease Day, raising awareness for rare diseases and improving access to treatment and medical representation for individuals with rare diseases and their families. This is at the very heart of CRDN and all that we do. We bring together stakeholders from research, industry, business, healthcare and patient charities to make a real and positive difference in the lives of people living with rare diseases, building a regional community to meet the unmet needs in rare disease.
This would not be possible without our talented and innovative board of trustees. For third sector organisations, trustees are the beating hearts behind the scenes sharing ultimate responsibility for governance and direction. CRDN is proud to have such a talented board at its helm and we caught up with two of our Trustees, Dr Sarah Leiter and Ilan Chaitowitz, who each bring their individual skills and insight to the charity, to find out more about what attracted them to the role, what they hope to bring to the charity an their hopes for the future of CRDN.
Being involved in CRDN has been fantastic!
CRDN Trustee – Dr Sarah Leiter
Sarah was born and raised in Germany before moving to the UK where she studied medicine at the University of Cambridge. Sarah explains, “I first got involved with CRDN at on of their rare disease lectures in 2017.”
At the time she was studying at medical school and was in the process of launching a student rare disease society. Sarah not only has a personal connection, she is a rare disease patient herself, but also as a scientist and medical doctor this combination has further piqued her interest and she offers a uniquely broad perspective. Sarah says of being a trustee at CRDN, “…when I was asked to join the board it seemed like the perfect opportunity to get more involved!”
Sarah’s passion and enthusiasm to help people is one of the driving forces behind her becoming a trustee. Living with a rare disease, Sarah can bring her own experiences and insight, understanding first-hand the frustrations that patients and their families can experience. In addition, having completed her PhD studies on a rare syndrome, Sarah also understands how research is carried out. Now a young medical doctor based at Addenbrookes Hospital in Cambridge she aspires to pursue a career in medical genetics.
Sarah making DNA models at the CRDN Rare-i-tea party
on Rare Disease Day 2020
Sarah describes how through her work as a trustee at CRDN, she has had the opportunity to learn a lot more about the industry around rare diseases and be part of some fascinating collaborative projects. As a trustee Sarah has had the chance to meet regularly with others involved in the rare disease community, further inspiring her to continue with her medical and scientific career.
Sarah’s hope for the future is to see the network grow and flourish, engaging more individuals, organisations and companies from across different sectors to work together to improve the lives of those affected by rare conditions. She strongly believes, “It’s not all about a cure but life more broadly.”
Trustee & TREASURER – Ilan Chaitowitz
Ilan, our newest trustee, joined the charity at the end of 2019 as Treasurer. Ilan has over 20 years of experience in the finance industry and it was this experience and the passion to spend his spare time, “in the pursuit of others’ wellbeing,” that led him to become a trustee at CRDN.
CRDN appealed to Ilan because, “It seeks to champion the causes of those most in need – the majority are children often with severe disabilities and terminal illnesses. There are usually no treatments and, given the small populations, weak incentives for governments or industry to develop them. CRDN attempts to address these issues through local meetings and activities, public awareness and stakeholder networking events.”
Ilan admires the other trustees’ energy and dedication and hopes to bring this same level of commitment that the others already do, “Their tireless effort has seen CRDN grow from nothing to a real presence in the UK’s rare disease landscape that has touched many lives already.”
Having been involved in the healthcare sector from a corporate perspective throughout his career, Ilan will use this experience and his familiarity with corporate developments on rare disease to drive fundraising efforts for CRDN. His experience in accounting and assessing business strategies also put him in good stead in the role of treasurer.
It (CRDN) seeks to champion the causes of those most in need
First and foremost, Ilan hopes that in his role as a trustee he will earn a sense of accomplishment and make a positive impact on the lives of others. Having spent his career in the world of finance, by contrast, he was raised in a family of carers and doctors. He feels that one thing he has missed out on is the reward of helping others in an immediate and personal way and as a trustee, he intends to fulfil this.
Ilan thinks that the rare disease landscape is at a pivotal point and goes on to explain that “it is incredibly interesting with new scientific tools showing some early promise; gene editing, machine learning and single-batch drug manufacturing. I have also never acted as Trustee in a charity, so look forward to working with others with very different backgrounds to myself to take the charity to the next level.”
Ilan is still new to the role but is already looking ahead to CRDN’s future. His initial focus is to understand the activities and finances in greater detail. He hopes to further strengthen the organisation’s financial foundation which will facilitate even more creative and mid-term planning.
Ilan is already impressed by how well CRDN is doing and the path that it is on. He explains that he wants to, “continue the current range of activities and then broaden them to impact more lives to an even greater extent, in a sustainable way, I would consider that a job well done.”