HITLAB TEAM • November 20, 2024
Caregiving in the United States is becoming an increasingly complex challenge, with one in five Americans taking on the role of a family caregiver. The demands can be overwhelming for the 22% of caregivers juggling full-time jobs alongside caregiving. Over 24 million caregivers report feeling overwhelmed under the combined weight of mental, physical, and financial pressures.
These challenges are even more significant for caregivers supporting individuals with rare diseases, especially diseases impacting cognitive abilities. Traditional caregiving models often fail to address these families’ unique and intricate needs. Navigating complex medical symptoms and providing emotional and physical support places an immense burden on caregivers. The growing complexity of rare diseases and the emotional toll they exact highlight the urgent need for innovative, targeted solutions.
Although technology offers some respite, the caregiving technology landscape often lacks the specialized features required for rare disease caregiving. This growing crisis demands a reimagined approach—solutions that support caregivers and empower them to navigate the complexities of rare diseases confidently.
MiraKare: Innovating Rare Disease Caregiving
MiraKare has stepped up to meet this need by creating a groundbreaking platform to support caregivers, patients, and advocates dealing with rare diseases, particularly those affecting cognitive abilities. MiraKare equips caregivers with the tools, knowledge, and insights they need to manage care confidently and proactively.
The platform centralizes care management by integrating health data from wearables, IoT devices, and caregiver journals. This data is transformed into actionable insights, enabling caregivers to understand better and address the care recipient’s needs.
At the heart of MiraKare’s mission is a commitment to amplify the “wellness voice” of individuals unable to express their needs, enhancing caregiving experiences and improving outcomes for caregivers and those they care for.
Collaboration with HITLAB: Advancing Caregiving and Research
MiraKare has partnered with HITLAB to conduct a qualitative research study with rare disease researchers, executives, and decision-makers to deepen its impact. This study aims to uncover current practices, challenges, and unmet needs in data collection for rare diseases affecting cognition.
Insights from this research will directly inform the ongoing development of the MiraKare platform, helping it better support rare disease organizations and caregivers alike. By integrating these findings, MiraKare strives to bridge gaps in caregiving and research, ultimately enhancing the quality of life for caregivers and their loved ones.
We invite you to participate in this study and contribute to shaping the future of caregiving and rare disease research. Click here to get involved. Together, we can make a meaningful difference.
About MiraKare
MiraKare is a health tech startup dedicated to transforming the caregiving experience for families managing rare and complex conditions. By providing innovative tools and resources, MiraKare empowers caregivers to navigate their journey confidently, improving outcomes for care recipients and their care team.
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