From Rare to Care

Celebrate Rare Disease Day 2024 with our expert interviews and stories!

In acknowledgment of the millions of people worldwide affected by rare diseases, explore our curated collection of podcasts, videos, case studies, and blogposts. As a scientific publisher, this year we want to showcase the active involvement of people facing rare diseases as "experts by experience" as we believe in empowering them to be authors of their narratives, fostering engagement, and ensuring their voices are heard.

Together, we want to amplify the rare disease community's voices, championing awareness, engagement, and progress.

READ OUR STORIES

Rare Diseases and Artifical Intelligence: What's Next?

How can artifical intelligence and digital technologies help patients living with a rare disease? And how will AI impact rare disease management? Digital expert Emily (Kunka) Lewis shared her point of view with us in a special podcast episode for Rare Disease Day 2024.

Listen below or read the transcript.

Emily (Kunka) Lewis: A Karger Ambassador

Emily (Kunka) Lewis, MS, CCRP, CHES is a subject expert in the digital transformation of healthcare. She is driven by a desire for the democratization of modern medicine. Emily received a Master of Science in Clinical Research from Northwestern University and is currently working as a Digital Transformation Project Lead at UCB.

As Karger Ambassador, she is contributing to many knowledge resources around Digital Medicine and AI and sharing insights on hot topics like interoperability, data privacy, and the game-changing potential of artificial intelligence

Learn more

Our Stories

Bob Perry, Patient Support Manager at WMUK

Who Dares Wins

Bob Perry was diagnosed with the rare disease Waldenström Macroglobulinemia in 2015. Since then, he set up a support group, the Bournemouth and District WM Support Group aka the BAD WMers and is Patient Support Manager at the UK charity WMUK.

Access the interview

The Future of Patient Engagement

In a podcast with "Let's Talk Rare", Iola Forster, Head of Healthcare Publications at Karger, discusses the future of patient engagement and the role of technology in healthcare, emphasizing the impact of patient involvement in content creation.

Listen now

Catherine Richards Golinini and Jonathan Gifford, Rare Disease projects at Karger

Raising Awareness. But How?

Catherine Richards Golini and Jonathan Gifford manage Rare Disease patient education projects at Karger Publishers. In a video podcast with Odelle Technology, they talk about multi-format learning experiences in rare diseases, what "patient-centred" really means, and the importance of reputable materials to raise global awareness.

Watch the talk

Pamela Marinou, Multichannel Campaigner at Karger

A Unique Perspective

Pamela Marinou, Campaign Consultant in Healthcare at Karger Publishers, tells us about her personal experience serving as Senior Campaign and Digital Communication Manager for Rare Disease Day 2 years ago.

Read now

From Rare to Care: Waldenström Macroglobulinemia

Waldenström Macroglobulinemia (WM) is a rare blood cancer in which cells multiply in an uncontrolled way due to a genetic mutation and affect the bone marrow and other places. UK patient organization WMUK and Karger Publishers are working together to fill the knowledge vacuum and ensure that affected people have more clarity about this little-known disease.

Download the summary sheet

Curious for More Stories?

STAY UP-TO-DATE

Care about Rare? Explore these Rare Diseases in Our Blog

HEMATOLOGY AND ONCOLOGY

Waldenström Macroglobulinemia

A type of non-Hodgkin lymphoma known as lymphoplasmacytic lymphoma (LPL). It is a rare blood cancer in which abnormal cells build up in the bone marrow and other places.

Read now

HEMATOLOGY

Thrombotic Thrombocytopenic Purpura (TTP)

A disorder usually caused by the body’s immune system attacking an enzyme in the blood called ADAMTS13, causing blood clots to form in vital organs.

Read now

HEMATOLOGY

Pyruvate Kinase Deficiency

A genetic disease that affects red blood cells. Everyone who has PK deficiency is born with it, even if they are diagnosed later in life.

Read now

NUTRITION

Long-Chain Fatty Acid Oxidation Disorders

With LC-FAOD, the body has trouble breaking down fat for energy, which can lead to symptoms such as low blood sugars, muscle pain/weakness, and heart problems.

Read now