Rare Diseases Archives

Delivering Global Access to Life-Changing Gene Therapy for Children with Ultra-Rare Disease

Posted | April 27, 2026

Study Overview In 2019, mdgroup partnered with Rocket Pharmaceuticals to support a Phase I/II clinical study investigating a gene therapy for pediatric patients with severe Leukocyte Adhesion Deficiency-I (LAD-I), an…

Alex Cheesman

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mdgroup live

mdgroup live episode 2: Sarah Woods: From Rare Disease Patient, to Rare Mom & Advocate

Posted | February 26, 2026

mdgroup live is our webinar series shining a spotlight on the people and stories behind clinical research. Too often, the human voices behind trials are hidden behind data and paperwork.…

Susanna Neuvonen

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Meet the Team

Why We Care: A Family’s Fight for Rare Disease Answers – Karen’s Story

Posted | January 26, 2026

At mdgroup, clinical research is more than a profession — it’s personal. Why We Care is a series of real-life stories from our team, sharing how clinical trials have touched their own lives,…

Susanna Neuvonen

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Young girl with a rare disease smiling at a healthcare professional during a home visit, symbolizing mdgroup’s support in removing barriers to clinical trial participation for rare disease patients.

Hybrid & Decentralized Trials

Removing Barriers to Clinical Trial Participation for People Living with Rare Diseases

Posted | September 23, 2025

For people living with rare diseases, clinical trial participation is often more than an opportunity to contribute to research. It can be their best hope of accessing potentially life-changing therapies.…

Alex Cheesman

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Blog post cover: Why We Care: Rafaela Mroz’s Decade of Dedication to Clinical Research - a picture of smiling Rafaela

Meet the Team

Why We Care: Rafaela’s Decade of Dedication to Clinical Research

Posted | August 9, 2025

At mdgroup, clinical research is more than a profession — it’s personal. Why We Care is a series of real-life stories from our team, sharing how clinical trials have touched their own lives,…

Susanna Neuvonen

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Group of risen hands with palms painted with vibrant colours and smiley faces

Patient Experience

Advocacy, Empathy, and Support for Rare Disease Patients in Clinical Trials

Posted | February 24, 2025

When a disease impacts the life of less than 1 in 2000 people, it’s considered a rare disease. According to Rare Disease Day, over 6000 different rare diseases have been…

Susanna Neuvonen

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image_Case-Study-16_Amyotrophic-lateral-sclerosis-ALS

Facilitating a Large-scale Global Study on Amyotrophic Lateral Sclerosis (ALS)

Posted | April 8, 2024

mdgroup is currently supporting a global study on the rare disease Amyotropic Lateral Sclerosis (ALS), a nervous system disease that affects nerve cells in the brain and spinal cord. We…

Alex Cheesman

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Tarquin smiling, text reads: patient care is not just about understanding it's about empathy

Patient Experience

What putting patients first really looks like

Posted | March 1, 2023

We’re proud to be a driving force in clinical trials, relentlessly pushing the industry towards adopting a patient-centric approach as standard. With ‘putting patients first’ as our mantra, we focus…

mdgroup Support

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Therapeutic Areas

Climbing on: Karin Haski on living with a rare disease and climbing for the USA

Posted | February 24, 2023

There is often less research on rare diseases' symptoms than on other diseases. This is why it’s crucial to listen to and understand the unique challenges individuals with rare diseases…

mdgroup Support

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