Saranam Foundation currently provides community-based palliative care services through multidisciplinary teams, focusing on improving the quality of life of patients with life-limiting illnesses.

Current Engagements

• Palliative Care Program at Kidwai Memorial Institute of Oncology (Oncology Patients)
• Recently initiated Palliative Care Services at KC General Hospital for general and geriatric patients
• Upcoming Pediatric Palliative Care Program at Indira Gandhi Institute of Child Health (IGICH)

Saranam’s Care Delivery Model

Each field team consists of:

• Doctor
• Critical Care Nurse
• Psychological Counsellor
• Physiotherapist

Daily Workflow

• Patients are categorized into three priority levels based on urgency and clinical need.
• Daily home visit schedules are prepared accordingly.
• Multidisciplinary teams conduct coordinated home visits.

Services Provided During Home Visits

The team focuses on comprehensive patient and caregiver support by:

• Reviewing the ongoing treatment plan prescribed by the treating physician.
• Ensuring medications are being administered correctly.
• Guiding families on home-based care and best practices.
• Advising simple physiotherapy and mobility exercises to reduce complications such as pressure sores and muscle stiffness.
• Providing psychological reassurance to both patients and caregivers.
• Engaging family members with simple caregiving responsibilities to improve shared support.

Observation: These regular visits provide significant emotional reassurance and practical support, reducing caregiver stress while improving patient comfort.

Follow-up Support

• Post-visit telephonic follow-up is conducted by the backend care coordination team.
• The team monitors patient progress.
• Families receive continued guidance and navigation support based on evolving needs.

Challenges Shared by Saranam Foundation

The team highlighted several operational challenges, including:

• Difficulty in obtaining death certificates for patients who pass away at home.
• Interest in identifying doctors who may be willing to assist families in such situations.
• Requested ORDI’s support in exploring possible medical networks that could facilitate this process.

Bereavement Support

Saranam Foundation also supports families beyond patient care by:

• Assisting caregivers with livelihood opportunities and employment placement after bereavement.
• Helping families transition following the loss of a loved one.

Patient Profile

• Average duration of palliative care support: 6–8 weeks
• Approximately 25% of patients require long-term palliative care services.

ORDI Perspective Shared

Mr. Prasanna Shirol provided an overview of:

• The rare disease patient journey from diagnosis through long-term management.
• The lifelong nature of many rare diseases and the need for sustained multidisciplinary support.
• The significant financial, social, emotional, and psychological burden experienced by patients and caregivers.
• Examples of rare disease conditions requiring long-term home-based care.
• The potential role of structured palliative care in improving quality of life for rare disease patients.
• Opportunities to increase awareness of palliative care through ORDI’s patient engagement programs, educational initiatives, and community events.

Potential Areas for Collaboration

• Explore adapting Saranam’s multidisciplinary home-care model for rare disease patients.
• Identify opportunities for pilot palliative care support for eligible rare disease families.
• Connect willing medical professionals to support home death certification where legally appropriate.
• Collaborate on awareness and education around pediatric and rare disease palliative care.
• Explore caregiver counselling and bereavement support initiatives.
• Develop referral pathways between ORDI, hospitals, and Saranam Foundation.
• ORDI expressed its interest in complementing Saranam Foundation’s efforts by facilitating access to essential medical devices for eligible palliative care patients

Key Takeaways

• Saranam Foundation has established a structured, multidisciplinary, patient-centric palliative care model with strong emphasis on home-based care.
• Their integrated approach addresses not only clinical needs but also the psychological, social, and caregiver aspects of patient care.
• There appears to be significant potential to explore adaptation of this model for rare disease patients, particularly those requiring long-term supportive care.
• A collaborative discussion has been initiated to evaluate feasibility, pilot opportunities, and resource requirements for extending similar support to the rare disease community.

About Saranam Foundation

Saranam Foundation currently provides community-based palliative care services through multidisciplinary teams, focusing on improving the quality of life of patients with life-limiting illnesses.

Current Engagements

• Palliative Care Program at Kidwai Memorial Institute of Oncology (Oncology Patients)
• Recently initiated Palliative Care Services at KC General Hospital for general and geriatric patients
• Upcoming Pediatric Palliative Care Program at Indira Gandhi Institute of Child Health (IGICH)

Saranam’s Care Delivery Model

Each field team consists of:

• Doctor
• Critical Care Nurse
• Psychological Counsellor
• Physiotherapist

Daily Workflow

• Patients are categorized into three priority levels based on urgency and clinical need.
• Daily home visit schedules are prepared accordingly.
• Multidisciplinary teams conduct coordinated home visits.

Services Provided During Home Visits

The team focuses on comprehensive patient and caregiver support by:

• Reviewing the ongoing treatment plan prescribed by the treating physician.
• Ensuring medications are being administered correctly.
• Guiding families on home-based care and best practices.
• Advising simple physiotherapy and mobility exercises to reduce complications such as pressure sores and muscle stiffness.
• Providing psychological reassurance to both patients and caregivers.
• Engaging family members with simple caregiving responsibilities to improve shared support.

Observation: These regular visits provide significant emotional reassurance and practical support, reducing caregiver stress while improving patient comfort.

Follow-up Support

• Post-visit telephonic follow-up is conducted by the backend care coordination team.
• The team monitors patient progress.
• Families receive continued guidance and navigation support based on evolving needs.

Challenges Shared by Saranam Foundation

The team highlighted several operational challenges, including:

• Difficulty in obtaining death certificates for patients who pass away at home.
• Interest in identifying doctors who may be willing to assist families in such situations.
• Requested ORDI’s support in exploring possible medical networks that could facilitate this process.

Bereavement Support

Saranam Foundation also supports families beyond patient care by:

• Assisting caregivers with livelihood opportunities and employment placement after bereavement.
• Helping families transition following the loss of a loved one.

Patient Profile

• Average duration of palliative care support: 6–8 weeks
• Approximately 25% of patients require long-term palliative care services.

ORDI Perspective Shared

Mr. Prasanna Shirol provided an overview of:

• The rare disease patient journey from diagnosis through long-term management.
• The lifelong nature of many rare diseases and the need for sustained multidisciplinary support.
• The significant financial, social, emotional, and psychological burden experienced by patients and caregivers.
• Examples of rare disease conditions requiring long-term home-based care.
• The potential role of structured palliative care in improving quality of life for rare disease patients.
• Opportunities to increase awareness of palliative care through ORDI’s patient engagement programs, educational initiatives, and community events.

Potential Areas for Collaboration

• Explore adapting Saranam’s multidisciplinary home-care model for rare disease patients.
• Identify opportunities for pilot palliative care support for eligible rare disease families.
• Connect willing medical professionals to support home death certification where legally appropriate.
• Collaborate on awareness and education around pediatric and rare disease palliative care.
• Explore caregiver counselling and bereavement support initiatives.
• Develop referral pathways between ORDI, hospitals, and Saranam Foundation.
• ORDI expressed its interest in complementing Saranam Foundation’s efforts by facilitating access to essential medical devices for eligible palliative care patients

Key Takeaways

• Saranam Foundation has established a structured, multidisciplinary, patient-centric palliative care model with strong emphasis on home-based care.
• Their integrated approach addresses not only clinical needs but also the psychological, social, and caregiver aspects of patient care.
• There appears to be significant potential to explore adaptation of this model for rare disease patients, particularly those requiring long-term supportive care.
• A collaborative discussion has been initiated to evaluate feasibility, pilot opportunities, and resource requirements for extending similar support to the rare disease community.

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Racefor7 promotes awareness, encourages early diagnosis, and calls for improved access to rare disease care across the country

News

By EH News Bureau On Feb 26, 2026

souces:https://www.expresshealthcare.in/news/novo-nordisk-india-partners-with-ordi-for-racefor7/452898/

The post Novo Nordisk India partners with ORDI for Racefor7 first appeared on Prasanna Shirol, Rare Disease Advocate.

Karnataka Health Minister, Dinesh Gundu Rao flagged off the Racefor7 in Bengaluru, extending strong support to the Rare Diseases community. Addressing participants, he announced that the Karnataka State Rare Diseases Policy will be released shortly, assuring families that the Government is committed to ensuring that no Rare Disease patient is left out. Racefor7, led by Organization for Rare Diseases India (ORDI), is a nationwide awareness movement advocating for early diagnosis, equitable access to treatment, and sustainable long-term care for individuals living with Rare Diseases.

The Minister’s assurance marks a significant step forward for Karnataka’s Rare Disease ecosystem and brings renewed hope to patients and caregivers across the State.

The theme for this year’s awareness run, “Run for Rare for Lasting Care,” underscored the collective responsibility of patients, caregivers, healthcare professionals, policymakers, and the public in building a more inclusive and supportive ecosystem for the rare disease community.

Source : https://www.biospectrumindia.com/news/16/27374/karnataka-health-minister-assures-state-rare-diseases-policy-soon.html#:~:text=Home,individuals%20living%20with%20Rare%20Diseases

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