Chiesi Global Rare Diseases Set to Bring to Life the Debate on Reducing the Patient Burden of Rare Diseases at WODC Europe 2024

The World Orphan Drug Congress (WODC) Europe is the largest and most established orphan drugs & rare diseases meeting of its kind across the globe

 

Chiesi Global Rare Diseases is uniting experts from across the rare disease community during Congress event - ‘Reducing the Burden of Rare Diseases across the Patient Journey’

 

Core focus for the event will be to address the gaps in the diagnosis journey of patients across European Union (EU) member states and provide patient-centric solutions

 

 

PARMA, Italy, October 22, 2024 – Chiesi Global Rare Diseases, a business unit of the Chiesi Group established to deliver innovative therapies and solutions for people living with rare diseases, will be hosting an event entitled ‘Reducing the Burden of Rare Diseases across the Patient Journey’ at the World Orphan Drug Congress (WODC) Europe 2024, being held October 22 – 25, 2024, in Barcelona, Spain.

 

The event, organised and funded by Chiesi, will bring together patients, patient groups, researchers, healthcare professionals, industry and policy makers to explore the potential solutions to speeding up and improving the patient journey of Europeans living with rare diseases, from research to diagnosis and access to treatment.

 

Divided into two parts, the session will begin by highlighting the patient experience, focusing on challenges, gaps and burdens along the rare disease ‘journey’. The second half will discuss multi-stakeholder solutions to these gaps from the view of industry, research and development (R&D), artificial intelligence (AI), health technology assessment (HTA) and health systems.

 

“We are delighted to have the opportunity to host this event at the prestigious World Orphan Drug Congress Europe, bringing together influential stakeholders to reframe the conversation on rare diseases with a health equity lens, placing the patients and caregivers firmly at the center of discussions,” said Enrico Piccinini, Senior Vice President, EU & International, Rare Diseases, Chiesi Group. “The burden of rare diseases on patients, their carers and families, healthcare systems, and society overall, merits greater visibility and recognition.”

 

The event will be moderated by Neil Bertelsen, Patient Advocate and Global Patient Engagement Specialist, and will include contributions from:

• Hanka Dekker, Director, VKS
• Peter Fish, Chief Executive Officer, Mendelian
• Federica Miotto, Head of Medical Affairs, Fondazione Telethon
• Enrico Piccinini, Senior Vice President, EU & International, Rare Diseases, Chiesi Group
• Natascha Sippel-Schönborn, Morbus-Fabry SHG
• Bob Stevens, Group Chief Executive, MPS Society

 

“People living with rare diseases face distinct and unique challenges, such as a long diagnostic journey, challenges in gaining access to expert centres and receiving the appropriate health interventions,” said Neil Bertelsen, Patient Advocate and Global Patient Engagement Specialist. “I am personally delighted to independently moderate such a diverse group of people affected by rare diseases alongside a range of experts to discuss solutions that move us towards healthcare that genuinely puts people affected by rare diseases at the centre.”

 

The challenges faced by people with rare diseases will be brought to life during the event with screenings from Chiesi’s ‘It’s Rare For Me’ platform, which offers people with rare diseases a voice and an opportunity to tell their stories in a special way: by showcasing something or somebody that is rare to them.

 

The ‘It’s Rare For Me’ project encourages a shift from the negative feelings tied to being a rare patient, to the positive idea of being a person that lives with a rare disease and is part of a worldwide community where we are all different, all rare and therefore unique.

 

Discussions will also build on the findings from Chiesi’s recent comprehensive report ‘Rare Disease Burden of Care and the Economic Impact on Citizens’, which thoroughly examines the escalating care challenges and economic impact on European citizens living with rare diseases.

 

The ’Reducing the Burden of Rare Diseases across the Patient Journey’ event will take place on October 22, 2024, 14:00-16:30, at the Hotel Catalonia Barcelona Plaza and will be accessible for those registered to attend WODC Europe.

 

In addition to the event, Chiesi will be hosting an official booth at WODC Europe 2024, showcasing screenings of the “It’s Rare For Me” video stories and featuring the LHONMuseum, an artistic journey to experience how a person living with Leber's Hereditary Optic Neuropathy (LHON) feels. Visitors to the booth will learn how the condition manifests and progresses whilst at the same time, being immersed in the beauty of art.

 

 

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About Chiesi Global Rare Diseases

Chiesi Global Rare Diseases is a business unit of the Chiesi Group, established to deliver innovative therapies and solutions for people living with rare diseases. As a family business, Chiesi Group strives to create a world where it is common to have a therapy for all diseases and acts as a force for good, for society and the planet. The goal of the Global Rare Diseases unit is to ensure equal access to therapy so as many people as possible can experience their most fulfilling life. The unit collaborates with the rare disease community around the globe to bring a voice to underserved people in the healthcare system.

 

About Chiesi Group

Chiesi is a research-oriented, international biopharmaceutical group that develops and markets innovative therapeutic solutions in respiratory health, rare diseases, and specialty care. The company’s mission is to improve people’s quality of life and act responsibly towards both the community and the environment.

 

By changing its legal status to a Benefit Corporation in Italy, the US, and France, Chiesi’s commitment to create shared value for society as a whole is legally binding and central to company-wide decision-making. As a certified B Corp since 2019, we’re part of a global community of businesses that meet high standards of social and environmental impact. The company aims to reach Net-Zero greenhouse gases (GHG) emissions by 2035.

 

With over 85 years of experience, Chiesi is headquartered in Parma (Italy), with 31 affiliates worldwide, and counts more than 7,000 employees. The Group’s research and development center in Parma works alongside 6 other important R&D hubs in France, the US, Canada, China, the UK, and Sweden.

 

 

Media Contact

 

Chiara Travagin

Rare Communication Manager, Chiesi Global Rare Diseases

Tel: +39 348 8818985

Email: c.travagin@chiesi.com

 

Nathan McGlone

Associate Director and Media Lead, Aurora Healthcare Communications

Tel: +44 7850 775 669

Email: nathan.mcglone@auroracomms.com

 

UK-CHI-2400780 | October 2024