PATIENT SUPPORT
Patient Support Groups
List of Patient Support Groups in Mumbai
Name | Theme | Address | Email Id | Contact | Website |
Women’s Cancer Initiative – Tata Memorial Hospital (WCl-TMH) | Cancer Support Group for Women | Women’s Cancer Initiative-Tata Memorial Hospital Room No.1109, 11th Floor, Homi Bhabha Building Dr. Ernest Borges Marg, Parel (E), Mumbai 400 012 | wcitmh@gmail.com | Tel: +91-22-2417 7000 Ext. 7201 | |
Multiple Sclerosis Society of India | Multiple Sclerosis Support Group | MS Society of India Seeta Sadan Flat No.2, Plot No. 259, Sion (West) Mumbai- 400 022 | homssofindia@gmail.com | 91-22-2403 7390 / 2403 7399 | |
TRIOMPH – A Patient Support Group | For Transplant Recipient of India And Organ Failure Patients Support Group | C/O MOHAN Foundation: 7th Floor, Trust House, 35 Hospital Avenue, Dr E. Borges Road, Parel, Mumbai – 400012 | triomph.psg@gmail.com | 91 82917 11936 | |
Konark Cancer Foundation | NGO dedicated to meet the logistical needs of outstation cancer patients coming to Mumbai to seek medical assistance at Tata Memorial Hospital | Mumbai Office – A/ 705 Shree Nityanand Society Andheri East, Mumbai – 400069 | info@konarkcancerfoundation.org | 91-8879887088 | |
Nanavati Max Saathi’ of Nanavati Max Super Speciality Hospital | Cancer Support group | S.V.Road, Vile Parle (West), Mumbai 400056 | 022-6836 0000, 2626 7500 | ||
Sanjeevani – Life Beyond Cancer | Cancer Support Group | 306, Gold Mohur, 3rd Floor, 174, Princess Street, Mumbai, Maharashtra 400002 | info@sanjeevani-lifebeyondcancer.com | 086910 00800 | |
ImPaCCT Foundation | Paediatric Oncology Support Group | Pediatric Oncology, Room 82, Main Bldg, Gr Fl, Tata Memorial Hospital, Parel Mumbai 400012 | impacct@tmc.gov.in shalinijatia@hotmail.com | 91678 80255, 022-2417 7220 | |
Tata Trust | Cancer Care Support Group | Bombay House, 24, Homi Mody Street, Mumbai 400 001, India | talktous@tatatrusts.org | 91 – 22 – 6665 8282 91 – 22 – 6665 8013 | |
Sir H. N. Reliance Foundation Hospital and Research Centre | Stroke Support Group | 1st Saturday of Every Month from 12 noon to 01:00 pm at Conference Room 1, Level 1, Kapol Niwas | rfh.strokesupport@rfhospital.org | 022-6130 5075/ 1-800-221-166 1-800-890-1111/ 022 35475757 | |
“We Can” – Sir H. N. Reliance Foundation Hospital and Research Centre | Kidney & Urology Support Group | rfh.renalscience@rfhospital.org | 022-61305763/ 1-800-221-166 1-800-890-1111 / 022 35475757 | ||
Samman Association | Epilepsy support group | Samman Association c/o Adapt India, 1st floor KC Marg, Bandra Reclamation, Bandra West, Mumbai, Maharashtra, 400050. | sammanassociation@gmail.com | 91-9137065004 | |
V Care Foundation | Cancer Support Group | A-102, Om Residency, J.W. Road, Near Tata Memorial, Hospital, Opp. Bhoiwada Court, Parel, Mumbai, Maharashtra 400012 | Admin@VCareCancer.org | TOLL FREE 1800-209–1101 OFFICE HELPLINE 9821949401–9821949402 (8am to 6pm) | |
Shweta Association | Vitiligo Support Group | Shweta Association 26, Sahawas Society, Karve Nagar, Pune – 411052. | (+91) 9284 652 032 / 8261 808 915 Toll-free: 1800 233 8760 | ||
Manav Foundation | Mental Health Support | 168, Tyre House, Lamington Cross Road, Alibhai Premji Marg, Grant Road (East), Mumbai, Maharashtra 400007 | info@manavfoundation.org.in | 918355871716 | |
Caregiver Saathi | Family Caregivers Community Support Group | info@caregiversaathi.co.in | 91-932-6161-735 | ||
Blue Circle Diabetes Foundation | Diabetes Support Group | support@bluecircle.foundation | |||
Echoing Healthy Ageing | Dementia Caregiver Support Group | Deccan House, behind DDecor Showroom, Patkar Blocks, Bandra West, Mumbai, Maharashtra 400050 | info@echoinghealthyageing.com | (+91) 9867832665 / (+91) 9158656665 | |
Umang Foundation | Cancer Support Group | Umang Foundation c/o Mr Ashish Goyal 1506, Ruby Building, Nirmal Lifestyles Residency – Phase 2, LBS Marg, Mulund West, Mumbai 400080 | umang.ashish@gmail.com | 91-9819940222 | |
Myeloma Friends Charitable Trust (MFCT) | Multiple Myeloma Cancer Support Group | 116, Blue Rose Industrial Estate, Next Metro Western Edge Mall, Off, W.E.Highway, Borivali (E), Mumbai, Maharashtra – 400066 | myelomafriends@gmail.com | (+91) 98673 38814 | |
Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute | Support Groups For Cancer Patients | Rao Saheb, Rao Saheb Achutrao Patwardhan Marg, Four Bungalows, Andheri West, Mumbai, Maharashtra 400053 | sandeep.goyle@kokilabenhospitals.com | ||
Gleneagles Hospitals | Brain Tumour Support Group | Gleneagles Hospital Mumbai 35, Dr Ernest Borges Rd, opp. Shirodkar High School, Parel East, Parel, Mumbai, Maharashtra 400012 | info.mum@gleneagleshospitals.co.in | 91 75488 10101 91 70457 09999 | |
Mumbai Fertility Clinic & IVF Center | Infertility and IVF Support Group | Kamala Polyclinic & Nursing Home, 66-C, Motiwala Building, 1st Floor, Gowalia Tank, A.K Marg, Grant Road (West), Opposite August Kranti Maidan, Mumbai – 400 026. | drjatin2000@gmail.com drjatin2000@yahoo.com | 917021380015 / +917021333232 91 9769763860 / 9769763862 | |
Maitri | Mental Illness Support Group | 205, 2nd floor, Eco Heights, Nityanand Society, Sahar Road, Andheri East. Mumbai 400069. | info@projectmumbai.org | 91 – 9653330712 | |
UHAPO Health Services Pvt. Ltd | Lung Cancer Support Groups | I-2, 9th Floor, Avenue – I, Global City, Narangi Bypass Road, close to VIVA College, Virar West – 401303 1st Floor, Haware Fantasia Business Park, Sector 30A, Next to Inorbit Mall, Vashi, Navi Mumbai – 400703 2059, Rustomjee Eaze Zone, Malad West, Mumbai, Maharashtra, 400064. | email info@uhapo.comemail info@uhapo.com email info@uhapo.co.in | 91-9137441392 91-9137441392 91-9137441392 | |
Mahatma Gandhi Mission Trust | Parkinson’s Disease Support Group Stroke Support Group Spinal cord injury (SCI) Support Group Cerebral palsy Support Group Down’s Syndrome Support group Amputation Support Group Arthritis Support Group | MGM School of Physiotherapy, Sector 1, Kamothe, Navi Mumbai-410209, Maharashtra, India | mgmschoolofphysiotherapy@gmail.com mgmschoolofphysiotherapy@mgmsopnm.edu.in | 022 2743 7866 | |
P. D. Hinduja Hospital and Medical Research Centre | Cancer Support Groups Diabetes Support Groups | 8-12, Swatantryaveer Savarkar Rd, Mahim West, Mahim, Mumbai, Maharashtra 400016 | info@hindujahospital.com | 022 6924 8000 | |
INNER SPACE | Support Group Sessions For Young Adults Adolescents Children | 1005, W, Universal Garden-I CHSL, Oshiwara Garden Rd, Amrut Nagar, Jogeshwari West, Mumbai, Maharashtra 400102 | info@innerspacetherapy.in | 91 9833985538 (Monday to Saturday between 9 am and 7 pm IST) | |
Apollo Hospitals | Colorectal Cancer Support Group | Plot No. 195/B, The Emerald, Sector 12 Besides Neel Siddhi Towers, Navi Mumbai, Maharashtra 400703 | 022 2788 1322 | ||
Institute Of Psychological Health | Support Groups of: Schizophrenia Caretaker Of Schizophrenia Epilepsy Addiction Recovering people Attention Deficit / Hyperactivity Disorder (ADHD) Cancer | 9th Floor, Shree Ganesh Darshan, LBS Marg, Between 3 Petrol Pumps & Hari Nivas Junction, Naupada, Thane (West). 400602. Maharashtra. INDIA | iphapts@gmail.com | 8104470639 / 9372486135 / 9870600369 / 9870600097 / 9870015694 | |
MOC Cancer Care & Research Center | Cancer Support Group | 1st Floor, SS House, Nehru Rd, Navpada, Vile Parle East, Vile Parle, Mumbai, Maharashtra 400057 | 088790 26609 |
What are patient support groups?
What are patient support groups?
A patient support group is a group of people with similar experiences and concerns, offering one another emotional and moral support.
Patient support groups consist of individuals who are either patients themselves or caregivers of patients who have similar illnesses. The primary aim of these groups is to provide support by exchanging personal experiences in dealing with the disease. This can cover various topics, including sharing information about symptoms, discussing treatment side effects, managing anxiety, and learning from other caregivers. By sharing their own experiences with someone who has faced a similar illness, individuals can find comfort, gain confidence, and obtain valuable insights and advice.
For many people, a health-related support group may fill a gap between medical treatment and the need for emotional support. Their doctor might not provide adequate emotional support, and their family and friends may not understand the impact of a disease or treatment. A support group among people with shared experiences may function as a bridge between medical and emotional needs.
Only about 10% of patients are actively involved in support groups. Lack of awareness, time constraints, and reluctance to confront the negative aspects of their illness are the obstacles to accessing these groups.
How are patient support groups helpful for patients and their caretakers?
Dealing with a chronic illness or medical condition can be emotionally challenging. Support groups provide a safe space where patients and caretakers can share their feelings, fears, and experiences with others who understand and empathize. It can be beneficial in the following ways.
- Learning effective coping strategies: In challenging times, acquiring new coping methods may be necessary. In a support group, individuals can learn techniques from those who have successfully used them. They can share tips on meditation, journaling, and other strategies and discover new methods for establishing healthy boundaries and improving functionality.
- Growing through shared experiences: Sharing personal experiences within the group can help alleviate emotional burdens and feelings of isolation. By listening to others’ stories, valuable insights on how to handle similar situations can be gained. Through participation in support groups, patients and caretakers often feel empowered to take an active role in managing the illness. They gain confidence, knowledge, and skills that enable them to advocate for themselves or their loved ones within the healthcare system.
- Focusing on self-care: Support group members can suggest innovative ideas for self-care, stress management techniques, ways to combat fatigue, and methods to enhance mental and physical strength. They can learn how to navigate the healthcare system, manage caregiving responsibilities, and care for their well-being while supporting their loved ones.
- Maintaining a sense of hope: Interacting with fellow support group members can uplift mood and optimism, providing emotional strength.
What support/ services do patient support groups provide?
Patient support groups offer a range of supportive services to individuals dealing with various health conditions:
- Emotional support: Support groups provide a safe and understanding environment where individuals can express their emotions, fears, and concerns without judgment. Members offer empathy, validation, and encouragement to one another.
- Information and education: Support groups disseminate valuable information about the medical condition, treatment options, coping strategies, and available resources. They may invite guest speakers, host educational workshops, or share relevant articles and materials.
- Peer counselling: Members of support groups often serve as peer counsellors, offering guidance, advice, and practical tips based on their own experiences.
- Advocacy and empowerment: Support groups empower individuals to advocate for themselves within the healthcare system. They may guide how to communicate effectively with healthcare teams, assert their rights, and access necessary services and accommodations.
- Social connection: Support groups facilitate social connections and friendships among individuals who share similar experiences. These connections can reduce feelings of isolation and loneliness.
- Online support: Many support groups now have online platforms or virtual meetings, making it easier for individuals to access support from anywhere at any time. Online support groups can also accommodate those with mobility limitations or live in remote areas.
- Caregiver support: Some support groups specifically cater to caregivers, offering them a space to share their experiences, seek advice, and receive emotional support from others in similar roles.
- Community events: Support groups may organize community events, such as awareness campaigns, fundraising activities, or social gatherings, to foster a sense of community and raise public awareness about the specific health condition.
How to find a support group?
Details regarding support groups can be obtained from the following sources:
- Your physician, clinic, or hospital
- Non-profit organizations dedicated to specific medical conditions or life changes
- National Institutes of Health websites focusing on particular diseases and conditions.
Which rare diseases in India have support groups dedicated to them?
In India, several rare diseases have support groups dedicated to raising awareness, providing support, and advocating for improved access to treatment and resources. Some of the rare diseases for which support groups exist in India include:
Multiple sclerosis: Multiple sclerosis is a chronic condition where the body’s immune system attacks the protective covering of nerves in the brain and spinal cord, leading to various symptoms like fatigue, weakness, and difficulty with coordination and balance. Multiple Sclerosis Society of India (MSSI) is a non-profit organization supporting individuals affected by MS in India. They offer various services, including information and education about MS, counselling and emotional support, rehabilitation services, and advocacy for improved access to treatment and care.
Thalassemia: Thalassemia is a genetic blood disorder characterized by abnormal haemoglobin production. Organizations like the Thalassemia Patients Advocacy Group (TPAG) in India provide support, education, and advocacy for individuals and families affected by thalassemia. Similarly, the Think Foundation organization runs a structured program to prevent Thalassemia Major by creating awareness and providing a facility for testing Thalassemia Minor.
Muscular Dystrophy: Muscular Dystrophy refers to a group of genetic disorders that cause progressive muscle weakness and degeneration. Support groups such as the Muscular Dystrophy Foundation India (MDFI) offer assistance, resources, and community for individuals living with muscular dystrophy and their families.
Spinal muscular atrophy (SMA): SMA is a rare genetic neuromuscular disorder characterized by muscle weakness and atrophy. Organizations like the CureSMA Foundation India work to support individuals with SMA by providing information, resources, and advocacy for improved access to treatment and care.
Haemophilia: Haemophilia is a rare bleeding disorder caused by a deficiency in clotting factors. Support groups like the Haemophilia Federation India (HFI) aim to empower individuals with haemophilia and other bleeding disorders through education, advocacy, and support services.
Rare genetic disorders: Various rare genetic disorders, such as lysosomal storage disorders, metabolic disorders, and rare genetic syndromes, have support groups in India. These groups provide support, information, and resources tailored to the specific needs of individuals and families affected by these conditions.
Rare cancers: Certain rare cancers, such as pediatric cancers (UGAM- a support group of childhood cancer survivors) and rare types of sarcomas (SPANDAN (VCare), have support groups in India that offer emotional support, information, and resources to patients and their families.
References
- Hu A. Reflections: The Value of Patient Support Groups. Otolaryngol Head Neck Surg. 2017 Apr;156(4):587-588.
- Patient support groups. Available from: https://patientsforpatientsafety.in/patient-support-groups.php#gsc.tab=0
- Therapy and medications. Support Groups: Types, Benefits, and What to Expect. Available from: https://www.helpguide.org/articles/therapy-medication/support-groups.htm
- Healthy lifestyle stress management. Available from: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/support-groups/art-20044655