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The Members and Volunteers who are changing lives of people living with a rare disease: Meet the 2022 Black Pearl Awardees

enero 2022

What does it mean to be awarded a EURORDIS Black Pearl Award, and who are this year’s recipients?

Meet the recipient of the EURORDIS Members Award 2022, Childhood Cancer International – Europe, and of the EURORDIS Volunteer Award, Graham Slater.

The Black Pearl Awards ceremony was created by EURORDIS to shine a light on the remarkable efforts to build a brighter future for everyone living with a rare disease. In this article, we are shining the spotlight on this year’s recipients of the Members Award, and the Volunteer Award. These awards were created to acknowledge the incredible efforts made by those dedicating their lives to making a difference for the rare disease community, whether it be an individual working alone or a team.

Who are the awardees, and why have they been chosen?

Firstly, meet Childhood Cancer International – Europe, an organisation with the vision of curing children and adolescents with childhood cancer with no or as few as possible long-term health problems. They have been active members of EURORDIS since 2013, and EURORDIS are awarding CCI Europe this Award in order to acknowledge the organisation’s active commitment to supporting children with cancer, from diagnosis until the rest of their lives.

It would be impossible to fit all the work of CCI Europe into one article. Notably, they created The Survivors Network, consisting of survivors-representatives of numerous survivor groups and organisations over Europe, in order to share resources and experiences and bring them to the European level: they collaborate, advocate and work towards making a change for the better for every childhood cancer survivor in Europe.

Secondly, meet Graham Slater. In 1953, Graham was born with Esophageal atresia (EA). He calls himself “one of the oldest survivors”, and although he has had a relatively healthy life, he has dedicated his career to ensuring that patients who are less fortunate than himself have the essential support and representation they need, which is why he is incredibly deserving of the EURORDIS Volunteer Award.

For the past decade-plus, Graham has worked nearly full time as a voluntary patient representative for the rare disease community in different projects, groups, settings, and topics, and he is a passionate advocate of international collaboration; for Graham it is vital that all rare disease patients can benefit from the sharing of good practises and the development of improved or new surgical techniques and after-care.

How do the awardees feel about receiving the award?

“For 10 years I have been a witness of a selfless, devoted and a brave community, not afraid to speak up and fight against all the challenges that childhood cancer brings with it”, says says Anita Kienesberger, Chair of CCI Europe Committee. “Not just childhood cancer itself, the research aspect, the treatment, mental health and what happens when it is over? Even then, it is not over. The ‘survivorship’ brings a whole new world of difficulties. This award is for them. For every young patient and their mothers and fathers taking care of them, for every survivor blindly entering the world of not having a follow up care, for every bereaved parent, for every health care provider who is silenced by the system, for every sibling whose world is or was shattering and for every person ever affected by the challenges of childhood cancer. We are extremely proud, as this is the first award we are receiving and it is a great acknowledgment of our work and, more importantly, is a reflection of everything our community is doing. This award is for them”

“I was quite surprised when I was told I was the recipient of the Volunteer Award, in fact I was quite overwhelmed”, says Graham. It is a tremendous honour to receive this award, and to be recognised in this way by EURORDIS, and by my colleagues and fellow volunteers, all of whom are so dedicated to the work they do. It’s really difficult to express just how much this means to me”

What part of the work that has led them to receiving this award are the awardees most proud of?

For Anita, “I am mostly proud of the strong partnership with our member-organisations and getting closer to those in the widening countries in order to understand their needs. Our wonderful and committed group of volunteers in our CCI Europe committee and the strategy we developed in the last year is also something we can be really proud of, as well as the very good relations with other patient-organisations, especially with EURORDIS and of course what we already achieved together in the ERNs [European Reference Networks]. We are now in the spotlight of the European Beating Cancer Plan, as well as all other rare diseases, which is great for our childhood cancer community.”

And for Graham, “it’s not easy to pick out a single event or activity.” He would like to think that his “greatest achievement has been in bringing together OA (Oesophageal Atresia) patients and their families across the world, facilitating their interaction, encouraging the establishment of OA patient groups in additional countries, and, crucially, developing improved international engagement and collaboration with clinicians and researchers, a role I have also been privileged to perform in a wider context with the ERN ERNICA.”

A huge congratulations to both Graham and the team behind Childhood Cancer International-Europe, for all your outstanding work for the rare disease community which has undoubtedly improved the lives of so many.

If you haven’t already, you can register for free to attend the ceremony virtually to see CCI Europe, Graham and our other recipients receive their awards from the comfort of your living room!

By Clara Maddison, EURORDIS Digital Communications Intern