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Rare Disease Day: Shining a light on the invisible challenges faced by patients

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March 2022

Four percent of the world’s global population – 300 million people – are affected by rare diseases. Despite its prevalence, the landscape of rare diseases is often plagued with challenges across the patient journey.

Diagnosis of rare diseases can often take five to seven years, as symptoms can be confusing and might hint at other diseases. Some local institutions may lack the infrastructure for timely diagnosis too, adding to the hurdle of getting diagnosed internationally.

Following diagnosis, getting treatments for rare diseases is equally as challenging – 94% of rare diseases have no approved treatment and current approach focuses on improving the patient’s quality of life through physiotherapy, cardiology, psychology, among many others. 

At the same time, patients and caregivers lack support systems that can guide them through the challenges of navigating life with a rare disease. They’re left to venture into unchartered territory, without help by their side.

Driving better patient outcomes for those with rare diseases needs an integrated approach

To support patients with unmet medical needs, we’re committed to the fight against rare and complex diseases, advancing treatments in our product pipeline, making them available to patients as quickly as possible. Our “Access to Medicines” approach is a cross-functional effort, deeply embedded within the business strategy that aims to improve patient outcomes and their journey from start to end.

With our deep sector expertise in hematology, immunology and metabolic diseases, we hope to bring about a positive shift in the rare disease landscape – providing patients with more options to seek help to manage their condition. However, this cannot be done alone. Supporting patients and caregivers in this arduous journey requires an integrated approach with healthcare providers, government officials, policy makers and the wider community.

We look forward to working closely with our partners to drive better awareness of rare diseases, improve diagnosis methods and management options.

Takeda’s Access to Medicines head Michelle Erwee, in collaboration with the NCD Alliance, recently discussed the unique challenges faced by people living with rare diseases in underserved communities and what companies like Takeda are doing to address this. Read the full article here.