rare diseases Archives

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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) through mobilehealth

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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mdtalk

mdtalk Episode 12: Support for parents and guardians of children with rare diseases

Posted | February 23, 2023

Through the mdtalk podcast and video series, we’re on a mission to highlight the most critical issues impacting clinical research, the patient experience, and the future of healthcare. Listen to…

mdgroup Support

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Navigator: Providing Logistical Support to a Family and Patient with Danon Disease

Posted | December 14, 2022

Facilitating remarkable patient experiences and removing the burden of site participation. The Challenge A young patient had the opportunity to participate in a clinical study into Danon disease, a rare…

mdgroup Support

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Blog

Rare Disease Day: Delivering Remarkable to Patients with Rare Diseases

Posted | February 28, 2022

We’re on a mission to facilitate remarkable experiences for patients taking part in clinical trials around the world, and this is especially important for those with rare diseases. Living with…

mdgroup Support

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Blog

Rare Disease Day 2022: Jennifer’s Story

Posted | February 25, 2022

Jennifer Kinnebrew is a Contract Administrator at mdgroup, based in North Carolina. As part of her role, Jennifer assists in ensuring contracts with our clients and suppliers are in place…

mdgroup Support

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Blog

Rare Disease Day 2022: Rafaela’s Story

Posted | February 24, 2022

Rafaela Vale is a Clinical Manager at mdgroup, working out of our Brazil office. She specialises in rare disease clinical trials, and has a special affinity to patients and their…

mdgroup Support

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