Carina Schey

Carina was first introduced to rare diseases at the age of 10. She observed a boy at school walking on his toes and wondered if his parents were aware of this unusual way of walking. At the end of the school day, she went to speak to the boy's class teacher who explained that the boy had Duchenne muscular dystrophy. Carina asked the teacher to write the name down on a piece of paper, and later that same day, perplexed by what the teacher had told her, she went to the library to obtain more information. Thus began a lifetime profound interest in rare conditions.

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Carina started her career as a clinical pharmacist, and after witnessing the problems in access to much-needed treatments, she moved into a commercial role developing homecare services for people living with rare conditions such as cystic fibrosis, intestinal failure, short gut syndrome, and Fabry disease. 

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Driven by the need to demonstrate the cost.-effectiveness of the homecare services, Carina completed a Masters in health economics. The doctoral studies that followed identified that adopting cost-effectiveness in resource allocation for treatments for rare diseases ran a high risk of ignoring key disease-related aspects. Her doctoral research focused on alternative methods to assess the value-add of orphan drugs - treatments for rare conditions. Carina developed several techniques to assess orphan drugs, with particular interest in multi-criteria decision analysis (MCDA) frameworks which she tested on a wide range of treatments. 

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Carina’s motivation is to ensure that people with rare  debilitating conditions have the support and treatments they deserve. To this end, she is committed to raising awareness in the healthcare sector, government, and the public, and being the voice of many.​ 

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​Carina is often a keynote speaker and panellist at health-related events and conferences. 

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With her lifelong desire to help others, Carina sits on the scientific advisory panels for several patient advisory groups and charities, and serves in the voluntary services in her village.

Sophie H Turner

Initiative Coordinator, Empowered By Us | Strategic Patient Advocate | Inclusion Specialist

Sophie H. Turner is a strategic patient advocate dedicated to improving access, inclusion, and healthcare policy for people living with rare diseases. Living with achondroplasia, she brings firsthand experience to her advocacy, ensuring that the voices of individuals with rare conditions are represented in healthcare and policy decisions.

As the founder and initiative coordinator of Empowered By Us, a grassroots action group promoting the societal inclusion of people with dwarfism, Sophie works to bridge healthcare access gaps and strengthen patient representation in decision-making processes. She collaborates with policymakers, patient advocacy groups, and industry to drive systemic change, focusing on sustainable and patient-centered solutions.

With expertise in patient advocacy, government affairs, and inclusion, Sophie is engaged in shaping key policy frameworks such as the EU Pharmaceutical Strategy and the UN Convention on the Rights of Persons with Disabilities (UNCRPD).  She works to ensure that rare disease patients have a seat at the table in regulatory discussions that influence innovation, accessibility, and affordability in treatment options.

As an advisory board member, Sophie provides strategic guidance on patient-industry collaboration, inclusive policy development, and regulatory strategies that promote equitable access to healthcare. A frequent panelist and speaker, she shares insights on integrating patient perspectives into drug development and healthcare systems, ensuring that innovation benefits all individuals, including those with rare conditions.

Pia Cox

Pia Cox holds a medical doctorate from the Catholic University of Louvain, with extensive training in surgery, HIV medicine, and public health. Her career experience in Belgium, the UK, the USA, Senegal, and Singapore, gave her a broad clinical perspective and a deep appreciation for different healthcare systems and cultures.

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Her expertise covers cancer care, infectious diseases, healthcare-associated infections (HAI), antimicrobial resistance (AMR), mental health, and primary care. This diverse experience has shaped her understanding of global healthcare challenges and strengthened her ability to bridge gaps between systems.

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Pia is a Founding Member, past Co-Chair, and Executive Director of All.Can Belgium, as well as a Founding Member of All.Can Senegal, demonstrating her commitment to improving cancer care. She serves as a Board Advisor for Global Healthcare Projects, an organization focused on addressing health inequalities in non-communicable diseases, and is an Ambassador for Eyes for the World, supporting children with vision impairments. Over the years, she has also been actively involved in patient organizations and has held several board positions in different healthcare-focused initiatives.

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Beyond clinical work, Pia has played a key role in healthcare insurance, leading efforts in medical management, quality assurance, and medical acceptance. Her passion for public health has been instrumental in developing reintegration programs aimed at addressing long-term incapacity due to stress-related illnesses such as burnout.

A strong advocate for the underprivileged, Pia is dedicated to reducing inequalities and creating opportunities for those who need them most. She actively uses her voice on social media to champion public health, human rights, and social justice.

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Driven by integrity, authenticity, and with a talent for communication, Pia excels at forging strong relationships and identifying untapped opportunities. She is a firm believer in multi-stakeholder collaboration as a key to driving meaningful change in healthcare and beyond.

Matt Bolz-Johnson

Matt Bolz-Johnson has worked at EURORDIS since 2014 as a patient advocate. Matt has over
15 years experience working in the rare diseases field specialising in the selection and approval
of expert centres in the NHS in England and for the European Reference Networks (ERN) used by the European Commission.

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Matt has supported the development of clinical networks for rare diseases at a national, regional and international level, ensuring patient groups to be active and be leaders in these networks.
 

Matt is leading the development of EURORDIS Mental Health Programme and Mental Health
Partnership Network and coordinating advocacy actions as well as leading the development of
a Mental Health Toolkit for Rare Conditions.
 

Matt is also an active advocacy lead for ATMPs working on EURORDIS Rare Impact initiative,
Join4ATMP & ERDERA ATMP research, to streamline the ATMP development pathway and
propose actionable solutions to improve patient access to cell and gene therapies in Europe.

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Notable highlights include:

• Developed the Partnership for Assessment of Clinical Excellence in ERNs (PACE-ERN), creating the blueprint for all 24 ERNs.

• Led the EURORDIS Rare Impact II initiative, researching criteria for Centres of Expertise in Advanced Therapy Medicinal Products (ATMPs).

• Pioneered the Patient Journey methodology, a framework mapping rare disease patients' needs to clinical pathways, notably with ERN GENTURIS

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Previously, Matt worked in NHS, England as a hospital manager and commissioner and
specialised in rare disease and highly specialised healthcare.