Challenges for Patients with Rare Diseases
Improper and Delayed Diagnosis
The dearth of expertise and knowledge in the rare diseases field has meant that patients often wait several years for a diagnosis, frequently receiving misdiagnoses and undergoing unnecessary, invasive investigations.1
Inappropriate Disease Management
The late diagnosis delays initiation of appropriate treatment and is often the main reason for inappropriate disease management, disease progression, treatment failure, increased mortality, and worsened well-being among rare disease patients.2
Reduced Trust and Adherence in Overall Treatment
Patients and caregivers are often seen to struggle with increased depression, loss of work, lack of information & trust in medical providers, symptom burden, and low adherence.3
The most important challenge in rare disease is diagnostic delays and the dissemination of standardized and primary care management by primary care physicians. Follow-up is also challenging as the codification is not easily accessible to the general patient.
Professor David Genevieve
Head of Department of Medical GeneticsUniversity Hospital Montpellier
Journey for a Rare Disease Patient on wellthy CARE™ platform
Case Study
Seven Month Fast Track to Standalone Samd co-development for a Leading Speciality Pharma in a Rare Disease
Download Case StudyThe wellthy CARE™ Engine
We understand the importance of a digital health platform for rare disease patients to actively monitor and improve their disease. This led us to build a solution that delivers:
Patient Success
Population Insights
Seamless Integration
Adoption and Engagement
Exploring Co-Creation for Enhanced Patient Outcomes?
Our Multi-disciplinary team at Wellthy is composed of medical experts, software developers, behavioral user-experience designers, compliance experts, and data scientists experienced keeping the patient at the center, while using your experience in medical needs and our expertise in building and developing a digital health solution, we can launch a novel solution for a specific rare disease that will help either to provide Proper and fast Diagnosis, improve disease management or even increase trust and adherence to the overall treatment.
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read moreReferences:
- https://www.futuremedicine.com/doi/10.2217/frd-2021-0002
- https://vertic.com/our-thinking/hallmarks-of-rare-diseases-the-role-of-digital
- https://pharmacia.pensoft.net/article/73240/element/4/412//
- https://ojrd.biomedcentral.com/articles/10.1186/s13023-020-01660-w
