wellthy CARE™ – A Digital Health Intervention Platform for Rare Disease Patients


What is a Rare Disease?

A disease is considered rare if it impacts less than 1 person in 2000

Over 7000 rare diseases are known

  • Multiple Sclerosis
  • Fabry Disease
  • Cystic Fibrosis
  • Spinal Muscular Atrophy etc..

80% are of genetic origin

Sources: 2021 Press Release of the French National Academy of Medicine, European Comission- Rare Diseases; Pfizer data

Challenges for Patients with Rare Diseases

Existing clinical pathways have partially bridged care gaps in patients with rare diseases–

  1. 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
  2. Overall Economic Consequences:
    • It is estimated that undiagnosed rare diseases have cost the NHS over £3.4 billion in the past decade, with 10% of the NHS budget in 2016 spent on rare diseases.1
    • Patients with rare diseases are understood to cost a hospital £13,000 each over 10 years, almost double the costs associated with other, more prevalent, diseases.1
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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

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Case Study

Seven Month Fast Track to Standalone Samd co-development for a Leading Speciality Pharma in a Rare Disease

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The 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:

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Patient Success

Evidence-based, patient-centered, fits perfectly into your care management routine, addresses risk factors

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Analytical Dashboard

Analyses patient data for enhanced monitoring

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Seamless Integration

Supports API-based integration with electronic health records to support a contextual view of patient information

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Adoption and Engagement

Weather forecast, inbuilt reward & value system, gamification, & treatment personalization, health coach & regular check-ins

Exploring Co-Creation for Enhanced Patient Outcomes?

Exploring Co-Creation?

Our Multi-disciplinary team at Wellthy is constituted of medical experts, software developers, behavioral user-experience designers, compliance experts, and data scientists experienced in co-creating digital health solutions in varied therapeutic areas for top pharma companies around the globe.

Keeping the patient at the center, while using your experience in cancer therapy development and our expertise in building and developing a digital health solution, we can launch a novel oncology care solution that shows improved adoption and engagement.

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More from Wellthy on Rare Diseases

Pulmonary Hypertension: How Wellthy’s digital tools can improve quality of life

Established by the PHA Association, Pulmonary Hypertension Awareness Month is now in its 30th year and encourages those who are connected to the condition to help spread awareness.

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References:

  1. https://www.futuremedicine.com/doi/10.2217/frd-2021-0002
  2. ​​https://vertic.com/our-thinking/hallmarks-of-rare-diseases-the-role-of-digital
  3. https://pharmacia.pensoft.net/article/73240/element/4/412//
  4. https://ojrd.biomedcentral.com/articles/10.1186/s13023-020-01660-w