Black Pearl Awards – Awardees
EURORDIS – Rare Diseases Europe wishes to recognise the major achievements and outstanding commitment of patient advocates, patient organisations, policymakers, scientists, companies, and members of the media who strive to make a difference for the rare disease community.
We would like to thank everyone for the hundreds of quality nominations we received! Although we would love to be able to award all of the stars of the community, we must limit the number of awardees each year to 11 categories, appointed by the EURORDIS Board of Directors.
Our 2025 Black Pearl Awardees will be announced on this page every week leading up to the ceremony, so stay tuned!
For the Social Media Award, however, the power is in your hands. Learn more about our amazing Social Media Award finalists and cast your vote! Voting will close on the night of the ceremony itself.
Learn more about the Award Categories.
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UNIAMO is a non-governmental federation representing more than 200 rare disease patient associations across Italy. Founded in 1999, UNIAMO has been committed to improving the quality of life of the 2 million people living with a rare disease in Italy. They have also consistently advocated on a European level for the protection of the rights of the rare disease community, as the National Alliance for Italy on EURORDIS’ Council of Alliances. A fundamental part of UNIAMO’s work is their coordination of Rare Disease Day (RDD) in Italy and their powerful awareness campaigns that shine a spotlight every year on this special day. This year’s Media & Awareness Raising Award honours UNIAMO’s RDD 2024 campaign, #UNIAMOleforze, created in partnership with the FantaSanremo fantasy game, inspired by the Italian Song Festival.
The campaign effectively engaged more young people and generated significant online participation, with 60,000 people joining the campaign’s dedicated ‘league’ and UNIAMO achieving 178 million impressions on FantaSanremo pages. Additionally, the campaign reached another seven million people through branding on electric buses in Rome, bus shelters in Bologna, and screens at Venice Airport, all featuring RDD colours and messages to show support for the rare disease cause and encourage public involvement. Perhaps most impressive was the 2024 Italian Song Festival’s 15 million viewers witnessing the host and eight artists showing their support for the rare disease community by making the community’s symbol with their hands on stage. The meticulous planning and execution of the #UNIAMOleforze campaign were exceptional, making it a well-deserved winner of this year’s award.
The Young Advocate Award is presented each year to an outstanding individual who actively contributes to raising awareness of key issues for people living with a rare disease at a local, national, or international level. This year, we would like to award Jane for his impressive involvement in several national and international initiatives promoting the rights of the rare disease community. We would also encourage him to continue his strong engagement as a young advocate for the rights of people living with a rare disease and of persons with disabilities.
Jane is from North Macedonia and is an advocate, student and passionate football fan. Jane is also a wheelchair user who lives with spinal muscular atrophy (SMA). His participation in UNICEF disability campaigns and in the UEFA campaign for equality and access awareness has helped to raise awareness of the social barriers that people with disabilities, including those living with rare diseases, must often fight against. EURORDIS also commends his speeches at high-profile international events, like the United Nations General Assembly, and his TED talk on “The life-changing power of assistive technologies”. The millions of views that Jane’s TED talk has gathered are a testament to its empowering content, and his vision of a more accessible society aligns closely with EURORDIS’ values and hopes for the future.
In 2023, we were fortunate enough to have Jane as a panel speaker at the Membership Meeting in Stockholm, where he gave voice to the important issues facing young people with rare diseases. Jane’s engagement with EURORDIS, SMA Europe and his national organisations like Stop SMA is paving the way for more young people to be heard and to actively participate in advocacy and awareness, to ensure that all people with rare diseases live their best lives.
All of these impressive examples of Jane’s recent advocacy exemplify why he is a highly deserving recipient of this award.
The EURORDIS Policy Maker Award recognises an outstanding commitment to the rare disease community at a local, national and international level. This year, we wish to commend Stella Kyriakides’ dedication to the rare disease cause as the European Commissioner for Health and Food Safety (2019-2024), which has set her apart as a true advocate for our community. With this award we would also like to recognise her team, who have been an invaluable support throughout her mandate.
During her time as Commissioner, Stella Kyriakides’ attentiveness to the unmet needs of EU citizens with rare diseases, and her understanding of the value of policy action on an EU-level, led to several developments that truly benefit the rare disease community.
Stella Kyriakides’ leadership was instrumental not only in the Europe’s Beating Cancer Plan and the creation of a new European Health Data Space, but also in the new European Pharmaceutical Strategy. This policy includes new legislative efforts focused on reforming rare disease and paediatric medicine regulations to boost innovation and improve timely access to treatments. She also made significant strides in addressing rare diseases by focusing on expanding the European Reference Networks (ERNs), a flagship EU initiative that is pivotal for patient care, with over 24 ERNs supporting diagnosis, treatment development, and data-sharing efforts for rare and complex diseases. Through the support of the Joint Action JARDIN, these networks will be better integrated into national healthcare systems, enhancing their sustainability and broadening their reach across member states.
Stella Kyriakides’ emphasis on the importance of newborn screening as a way to attain the highest standard of care for those born with a rare disease has been invaluable in highlighting the need to reduce disparities in access to screening across the EU.
Her dedication during and following the COVID-19 crisis to building a comprehensive health programme and budget is also truly commendable and essential in demonstrating the need for collaboration for EU healthcare. We are particularly grateful for her engagement in sustaining Operating Grants for civil society organisations in the field of health. This truly testifies to the value she holds for these organisations for patient groups, and for their roles in advancing health policy at the EU level.
We are honoured to be able to count on Stella Kyriakides to continue her advocacy for the rare disease community post-mandate.
Proyecto Alpha is a Spanish non-profit association that represents and helps those living with muscular dystrophy due to Sarcoglycan deficiency, and their families. They are a reference association at national level, and they collaborate with the patient advisory committee at European level, as well as with global organisations worldwide. They also collaborate with Sant Joan de Deu hospital in Barcelona on the first natural history study of rare diseases in Spain.
Their extensive work includes their powerful documentary, Never Stop Moving and their song representing and giving visibility to those affected by a rare disease.
The EURORDIS Media Award recognises media pieces raising awareness of rare diseases and bringing the needs of people living with a rare disease to a broader audience.
With this award, we want to celebrate the documentary’s compassionate depiction of the daily struggle of individuals living with muscular dystrophy and its message of hope and solidarity. Never Stop Moving not only highlights the resilience of Laura, Gerard, and Lucas by sharing their stories, fears, and triumphs but it also offers a unique and creative approach to raising awareness and demonstrates the importance of research in finding a cure.
Its impressive presence on social media platforms, coupled with its recognition in written and audiovisual press, underscores its success in making these diseases more visible. Never Stop Moving not only informs but also inspires its public, making it a highly deserving recipient of the EURORDIS Media Award 2024.
Check out the official trailer here: https://youtu.be/X-W_WAwlQsE
The 2024 EURORDIS Company Award for Innovation recognises Sanofi’s commitment to advancing rare disease research and medicines development. Building on a 40-year legacy in rare diseases, Sanofi has constantly been discovering, developing and delivering medicines that translate into clinical benefit and positive impact for patients’ lives. Pioneering the first-ever medicines for five rare disorders, the company has continued to explore novel biological pathways and disruptive technology platforms to advance solutions spanning multiple disease areas. Forging meaningful collaborations driven by patient insights and multidisciplinary expertise, Sanofi’s commitment to improving access to diagnosis, treatment and care extends across over a hundred countries, ensuring innovation is brought to underserved communities. EURORDIS commends Sanofi’s journey alongside people living with a rare disease, striving to help them achieve a fulfilling future.
José-Alain Sahel, M.D., is a distinguished professor, chairman of the Department of Ophthalmology, and The Eye and Ear Foundation Endowed Chair at the University of Pittsburgh School of Medicine, and an adjunct professor of Robotics and Bioengineering at Carnegie Mellon University, Pittsburgh. He is an emeritus professor of Ophthalmology at Sorbonne Université and was the founding director of The Vision Institute (Sorbonne Université, Inserm, CNRS) Paris, France (till 31 December 2020).
Trained at Paris University Medical School, Louis Pasteur University in Strasbourg, and Harvard University, Dr. Sahel is a clinician-scientist conducting research on vision restoration focusing on cellular and molecular mechanisms underlying retinal degeneration and development of treatments for currently untreatable retinal diseases.
As the founder of the Vision Institute in Paris and the new Vision Institute in Pittsburgh, Dr. Sahel has conducted and overseen more than 80 clinical trials on retinal conditions, some of them within the most advanced areas of biomedical technologies (first in human trials in retinal implants, gene therapy, stem cell therapy, optogenetics).
With over 700 peer-reviewed articles and 40 patents, he is a prolific researcher and has co-founded companies developing innovative vision restoration therapies. His esteemed memberships include the Académie des Sciences-Institut de France, the Académie des Technologies, the Association of American Physicians, the American Ophthalmology Society, the German National Academy of Sciences Leopoldina and the National Academy of Inventors.
The EURORDIS Scientific Award recognizes Dr. Sahel’s excellence in scientific research in the field of rare diseases, with a primary focus on retinal diseases and inherited retinal degenerations. His pioneering efforts in research and his relentless pursuit of understanding the genetic and molecular foundations of these conditions have been truly outstanding.
Moreover, his collaboration with international organisations and institutions has played a pivotal role in advancing the diagnosis and treatment of rare eye diseases. His dedication has translated into meaningful improvements in the lives of patients worldwide, and for this, we would like to honour his ground-breaking achievements.
DEBRA International is the international alliance of DEBRA and other epidermolysis bullosa (EB) advocacy groups working on behalf of people with EB, a group of rare, chronic, and debilitating genetic skin disorders. DEBRA International envisions a world where anyone with EB has support from a DEBRA group, and access to specialist treatments, healthcare, and social support. DEBRA has grown exponentially over the past 50 years with the establishment of nearly 50 national DEBRA and other EB advocacy groups around the world, all working towards improving the lives of those living with EB in their respective countries. DEBRA also acts at an international rather than national level to reduce duplication of efforts, avoid wastage of resources, and help achieve objectives faster.
In recent years, despite facing various legal and logistical challenges, under the exceptional leadership of Dr. Ritu Jain, DEBRA International provided much-needed support for members of the rare disease community affected by conflicts and natural disasters, particularly in Ukraine, Turkey, and Syria in 2022-2023. Through swift community mobilisation and strategic alliances, including a significant collaboration with the Singapore Red Cross, they provided vital assistance to patients and their families in crisis zones.
The organisation efficiently distributed humanitarian aid to patients and hospitals along the Polish-Ukraine border. Their assistance to 120 Ukrainians living with severe epidermolysis bullosa (EB) and commitment to aiding individuals with Duchenne muscular dystrophy and familial Mediterranean fever in disaster-affected regions in Turkey and Syria, is remarkable.
DEBRA International’s relentless commitment to people living with rare diseases during crises has significantly raised awareness about rare diseases in the realm of humanitarian aid. We believe that their collaborative approach and unwavering dedication to supporting rare disease patients in extreme adversity make them highly deserving of the Black Pearl Members Award.
Alba Parejo is a Spanish content creator who was diagnosed with Giant Congenital Melanocytic Nevus (GCMN). This rare condition means that she was born with a giant spot from her back to her knees and more than 1 thousand moles around her body.
Having a GCMN means that she can develop skin cancer and neurocutaneous melanosis, that is why she has had more than 30 medical interventions to remove the big mole. Currently, she is a content creator who raises awareness about self-love, empowering patients and her rare condition through her social media, her book called “From my skin: how I learned to love my constellations” and as a speaker in different conferences.
Her motto is: “All the animals have prints; but humans are the only ones who are born as a blank canvas. I am proud of having my own different animal print.”
Learn more: https://www.tiktok.com/@albaparejo
Alain Coheur has had an impressive career. Since 2002, he has served as the Director of European and International Affairs at Solidaris Mutualité in Belgium. Over the years, he has held notable positions such as President of Social Economy Europe and Vice-President of the Belgian Agency for Development Cooperation. He has also been actively involved in various organisations, including the European Commission Expert Group on Social Entrepreneurship and the European Economic and Social Committee (EESC). Notably, he served as Chairman of the Internal Market, Producer, and Consumer Commission between 2020 and 2023, and is now Vice President. His contributions extend beyond his professional roles, as he is also a Lecturer at the University of Liège, Faculty of Medicine, School of Public Health since 2022.
The EURORDIS Policy Maker Award recognises Alain Coheur’s dedication as a Member of the European Economic and Social Committee, which has set him apart as a true advocate for the rare disease community.
His notable contribution as rapporteur to the EESC Own Initiative Opinion is particularly praiseworthy. The report resulting from this effort is exceptional, providing a comprehensive and insightful overview of the rare disease ecosystem. Alain Coheur’s call for a new European strategy for rare diseases, aligning with Rare 2030 recommendations, the 2021 UN GA Resolution, and the EU Council Presidencies leadership, underscores his visionary leadership in advocating for those with rare diseases.
One of the most remarkable aspects of his work is the innovative proposal for a European Solidarity Fund for rare and complex diseases presented at the 2023 Bilbao Conference on Rare Diseases (RDs) and European Reference Networks (ERNs), which garnered enthusiastic support. His passionate advocacy for mutualisation at the European level to ensure innovative treatments for rare disease patients cannot be understated.
Silvia Aguilera is currently the Vice President of the Spanish Antiphospholipid Syndrome Association (SAF España) where she has volunteered in roles such as social media and international relations manager since 2015. She is also a patient representative for her disease in the European Reference Network for connective tissue and musculoskeletal diseases (ReCONNET) and since June 2023, she is a member in the patient PARE committee for the European Alliance of Associations for Rheumatology (EULAR).
She is also part of several patient and medical work and study groups, like the EULAR Study Group on Reproductive Health and Family Planning, and the Patient Advisory Network in Lupus Europe. Silvia has been an active volunteer in several EURORDIS working groups, on topics like communicating with European patients or the changes in Assessment, Monitoring, Evaluation and Quality Improvement System (AMEQUIS).
The EURORDIS Volunteer Award recognizes this extensive dedication Silvia has shown to the rare disease community.
What sets her apart is her extraordinary teamwork spirit and pragmatic approach. She stands as an exceptional leader and dedicated volunteer, carrying out her work with immense passion. Beyond her voluntary work in ReCONNET ERN, her impact within different ePAG working groups has been substantial, and her collaboration on matters of common interest makes her one of the main voices in shaping a healthy and effective patient partnership in the European Reference Networks. Moreover, in 2022, her proactive approach in initiating collaboration between the Spanish National Alliance and ePAG advocates at the national level demonstrates her unwavering commitment to driving positive change.
RareResourceNet was founded, in 2018, to establish a European network of rare disease resource centres. Its mission is to advance holistic, high-quality care and services for people living with rare diseases across Europe.
RareResourceNet’s vision of holistic care is one that addresses the multidimensional health, psychosocial, educational, and daily life needs and wishes of people with a rare disease and their family members. The resource centres who are members of the network are leaders in promoting a person-centred and multidisciplinary approach to care and support.
The EURORDIS Holistic Care Award recognizes this vital role RareResourceNet and its member resource centres play in accelerating the implementation of holistic care across Europe. Their commitment to ensuring that people living with rare diseases and their families attain the highest standard of health and wellbeing, and gain equal opportunities, rights, and full participation in society is truly commendable.
With this award, we want to praise the longstanding achievements of its member resource centres in elevating care standards and in empowering service providers, professionals, people with rare diseases, and their families. Furthermore, we want to recognize and support their vision and mission as a network.
We believe that RareResourceNet can greatly contribute to creating positive change and be a strong advocate, working alongside our members and others in the rare disease community, to support the development of policies and services which truly support people with rare diseases and their families to live their best and fullest lives.
Acknowledging meaningful and impactful collaboration, the 2024 EURORDIS Company Award for Patient Engagement recognises Pierre Fabre and the EspeRare Foundation’s commitment to serving and empowering rare disease patients.
Through building mutual trust with affected families and engaging patients as equal partners in helping to further disease knowledge and shape each step of the clinical development programme, Pierre Fabre and the EspeRare Foundation are advancing the potential to address, in-utero, a rare genetic disease.
EURORDIS commends both partners for co-developing the first and only prenatal treatment for X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED) through a patient-focused approach. This achievement has garnered regulatory support in both Europe and the United States, and holds promise for life-changing outcomes for an underserved community.