About IMDPWF...
Who We Are
Welcome to Inherited Metabolic Disorder Patients Welfare Foundation (IMDPWF) Nurturing Hope for Children with Inborn Metabolic Disorders
At IMDPWF, we are dedicated to creating a nurturing haven for families and children facing the unique challenges of inborn metabolic disorders. We understand that each child is a unique individual, and our mission is to provide comprehensive support, resources, and a sense of community for families navigating this journey.
Vision
At IMDPWF, we believe in fostering a community of strength, resilience, and hope. Join us as we strive to make a positive impact in the lives of children with inborn metabolic disorders and their families. Together, we can create a brighter future.
Mission
Whether you’re a parent, caregiver, or healthcare professional, we invite you to join our community. Together, we can:
Share experiences and insights & Learn from each other’s journeys.
Aims & Objectives
- 1. To establish, support, and manage care centers, clinics, diagnostic labs, and rehabilitation facilities dedicated to the diagnosis, treatment, and long-term management of inherited metabolic disorders (IMDs) in urban, rural, and remote areas.
- 2. To promote awareness about IMDs through campaigns, workshops, and digital platforms, educating the public, healthcare professionals, and policymakers about early diagnosis, genetic counseling, and preventive measures.
- 3. To facilitate research into IMDs by collaborating with medical institutions, universities, and research organizations, and to fund studies on novel therapies, dietary management, and gene-based treatments.
- 4. To provide financial assistance, subsidized treatments, nutritional supplements, and medical equipment to individuals and families affected by IMDs, prioritizing marginalized and economically disadvantaged groups.
- 5. To collaborate with governments, international agencies, and other NGOs to advocate for policies that improve access to newborn screening programs, specialized healthcare, and affordable orphan drugs for IMD patients.
- 6. To organize conferences, training programs, and skill-building workshops for healthcare professionals, caregivers, and patients to enhance knowledge about IMD management and psychosocial support.
- 7. To publish educational materials, guidelines, and multilingual resources (print, digital, and audiovisual) on IMDs for patients, families, and medical practitioners.
- 8. To establish a national registry of IMD patients to track epidemiological data, improve care coordination, and advance evidence-based policymaking.
- 9. To create support groups, helplines, and counseling services for patients and families to address emotional, social, and financial challenges associated with IMDs.
- 10. To raise funds through grants, donations, CSR partnerships, and fundraising events to sustain the organization’s initiatives and expand its reach.
- 11. To collaborate with genetic testing labs, biobanks, and research institutions to improve access to advanced diagnostic tools and personalized medicine for IMD patients.
- 12. To advocate for the inclusion of IMDs in national health programs, insurance schemes, and disability rights frameworks to ensure equitable care.
- 13. To engage in international partnerships for knowledge-sharing, capacity-building, and advocacy on rare metabolic disorders.
- 14. To undertake any other activities incidental or conducive to the above objectives, as permitted under applicable laws governing non-profit organizations.
Primary Objectives
- To support individuals affected by inherited metabolic disorders(IMDs) through nutritional, medical and financial assistance and to establish and manage healthcare facilities for the diagnosis, treatment and long-term care of IMD patients.
- To promote awareness and early detection of IMDs through public education, professional training and collaborate with research institutions for the development of effective therapies and diagnostic IMD tools.
- To advocate for the inclusion of IMDs in national health policies and improve patient access to essential healthcare services.
They Need Your Help!
At IMDPWF, we believe in fostering a community of strength, resilience, and hope. Join us as we strive to make a positive impact in the lives of children with inborn metabolic disorders and their families. Together, we can create a brighter future.
