Client
Indo US Organization for Rare Diseases
Service
Deliverables
Blogs
About the Client
IndoUSrare, or the Indo-US Organization for Rare Diseases, is a non-profit organization dedicated to accelerating access to therapies for rare diseases. They achieve this by fostering collaborations between stakeholders in the USA and India, promoting cross-border research, data sharing, and clinical trials. IndoUSrare also advocates for policy change, funding, and resources, while raising awareness about rare diseases and supporting affected individuals and families.
Challenge
The challenge was to effectively document and highlight the immense hardships and prolonged journey faced by families searching for a correct diagnosis for rare genetic conditions. Specifically, this project aimed to capture the real-world struggle of a family whose two children were affected, emphasizing the systemic issues hindering timely diagnoses.
Approach
Our approach involved conducting in-depth interviews with the parents of two children affected by a rare genetic condition. We meticulously documented their personal experiences, the emotional and practical hardships they endured, and their extensive journey through the medical system in their quest for an accurate diagnosis. This narrative was then crafted into a compelling story.
Results
We successfully created the project "In search of a correct diagnosis," a powerful blog article that shares the authentic story of a family's arduous 13-year journey to find a diagnosis for their children's rare genetic condition. This documentation effectively raises awareness about the significant diagnostic challenges in the rare disease community and IndoUSrare's role in supporting such families.
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