Patient Services Program

Purna Samparq is an initiative independently managed and run by an approved patient services agency.

The program is digitally enabled with value offerings at each point in the patient journey with a. Patient Educations Programs to rive awareness b. Factor and inhibitor screenings to support in diagnosis c. Support services for prophylaxis patients including but not limited to Prognostic inhibitor screenings and assays, nursing, self-infusion training, physiotherapy, counseling to support in treatment and maintenance. These services help in resolving the unmet needs across the continuum of care collaborating with stakeholders like Patient Organizations.

The objectives are to improve patients’ QoL aiming at zero bleeds, decreased hospitalizations by driving prescribed therapy adherence, increasing ease of disease management via support services & enablement of a patient in becoming reliant.

Poorna Samparq patient support program touched patient lives throughout their journey starting from awareness through >200 patient education programs, supporting in diagnosis of rare diseases wherein 1700+ patients have been screened and ~200 patients have been detected inhibitor positive and providing treatment and maintenance support to ~2000 patients through counseling and nursing impacting their health outcomes and overall quality of life. This is the impact seen from FY 21 & FY 22 till November.

Illuminating Rare:

Lysosomal Storage Disorder (LSD) diagnosis support program that aims at enabling faster diagnosis; bridging infrastructural gaps to enable timely treatment and management (counselling & navigation to treatment & maintenance) of the disease leading to symptomatic improvement.

Illuminating Rare partners with a qualified US-based diagnostic partner, one of the leading diagnostic services for inherited disorders for testing support, and program management with an independent 3rd party.

It mobilizes LSD early detection and avoids delayed/misdiagnosis to supplement the screening initiatives. It will support better treatment outcomes through counselling and reimbursement channel navigation support by fiscal year end. An additional post treatment & maintenance program for Genetic disorders is under implementation to drive disease awareness among patients for genetic disorders, reimbursement navigation support, improved treatment outcomes via patient symptom management education.

Illuminating Rare has successfully screened 200+ HCP recommended patients since its launch last year and illuminated the paths of ~75 people with positive early diagnosis of LSDs (Gaucher, Fabry, MPS II), by providing them access to cutting-edge diagnostic support, helping them on their journey towards better health and brighter future. There were a total of 300+ tests performed to support in the screening of 129 patients in this FY 2022 itself up to November which showcases the zeal of Takeda in partnering with the medical fraternity to help in early diagnosis and hence give patients and their caregivers the hope of accessing the right treatment for disease management.