King Edward Memorial (KEM) Hospital in Mumbai has been actively involved in charitable work, particularly in the treatment and support of patients with rare diseases. Recognized as one of the 11 Centres of Excellence (CoE) for Rare Diseases by the Ministry of Health and Family Welfare, KEM Hospital serves as a major referral center for genetic disorders, handling approximately 600 to 800 patient referrals annually.
Common and rare genetic diseases (chromosomal disorders, microdeletion/ microduplication syndromes, skeletal dysplasias, inborn errors of metabolism, malformation syndromes, families for prenatal counseling and prenatal diagnosis, premarital counseling, recurrent reproductive losses, disorders of sexual development and many other categories) are evaluated and treated every year at the centre. More than 30 patients with lysosomal storage disorders like Gaucher disease, Pompe disease, mucopolysaccharidosis type II and type VI have received enzyme replacement therapy. Children with spinal muscular atrophy are also receiving treatment with antisense oligonucleotide (ASO) therapy with Nusinersen (Spinraza) since the past two years.
Apart from other rare diseases, the institute has done pioneering work on Budd Chiari syndrome, a rare vascular liver disease affecting children and young adults which if recognized and intervened early can prevent worsening of liver functions. Gastrointestinal diseases like “very early onset” inflammatory bowel disease, genetically predisposed pancreatitis, endocrine disorders like neonatal diabetes, neuroendocrine tumours and hematological non- malignant childhood diseases like congenital dyserythropoeticanemia, Diamond Blackfan syndrome, and coagulation factor deficiencies are a few of the wide spectrum of rare diseases that the institute caters to.
Collaborative Effort of 3 Key Institutes
The collaboration between the Piramal Foundation, Seth G.S. Medical College, and King Edward Memorial (KEM) Hospital focuses on enhancing healthcare services in Maharashtra’s aspirational districts, particularly benefiting tribal populations. Initiated through a three-year Memorandum of Understanding (MoU), the partnership aims to improve the well-being of approximately 2.8 million tribal residents. The initiative commenced in Palghar district, which has over 68% tribal population, with plans to expand to other districts. The program aims to annually enhance health indicators by 6-8%, addressing issues such as malnutrition, maternal and child health, anemia, and tuberculosis among tribal communities.
The Piramal Foundation leads the project, providing training for healthcare workers and volunteers, while KEM Hospital offers technical support, tele-consultations, and capacity-building for frontline health workers.
Fundraising benefits patients directly
The Diamond Jubilee Society Trust (DJST) collaborates with King Edward Memorial (KEM) Hospital to enhance healthcare services, medical education, and research. The trust raises funds through donations, grants, and partnerships to support medical initiatives, including patient care and infrastructure development particularly for underprivileged individuals and those with rare diseases. The trust also supports medical research and training initiatives at the hospital, helping improve diagnosis, treatment, and education. Together, they raise awareness about healthcare challenges and advocate for better policies, while addressing financial and infrastructural limitations. Their combined efforts aim to advance healthcare access, improve outcomes, and foster innovation in medical science.
Future plans in advancing healthcare services
The program also plans to create a joint curriculum for medical students to volunteer, learn, and teach in Maharashtra’s Aspirational Districts through a fellowship programme, promoting knowledge sharing and community service. The program’s comprehensive agenda includes establishing VHSND sites, Anemia MuktAbhiyaan, Tuberculosis-Free initiatives, improving child and maternal health, addressing malnutrition and non-communicable diseases, conducting health camps, and implementing school health programs.
Also read: KEM Hospital to Start Specialized Clinic for Non- Alcoholic Fatty Liver Disease
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