Patient Support Groups comprise of patients and/ caregivers with similar illnesses. The objective of the PSG is to provide support by sharing patient’s own experience while dealing with the illness. This could range from knowledge of symptoms, side effects of treatment, dealing with anxiety and learnings from caregivers etc. Just sharing with someone else who has suffered similar illness and how they dealt with it, provides comfort and confidence besides getting valuable tips. These Patient Support Groups do not aim to replace a doctor or medical care provider/facility, but step in to supplement their efforts to provide mental and emotional strength to the patient. These PSGs are a very useful community support system to healthcare providers. We are trying to provide a list of support groups based on the information available. If you come across a PSG which should be included, please do write to us.
Advocacy for enhancing scope of RPWD Act 2016,Patient Support and Aid through multiple chapters across India
MS Society of India, Seeta Sadan Flat No.2, Plot No. 259, Sion (West), Mumbai- 400 022 / homssofindia@gmail.com
Asha Merchant , Secretary, MSSI Pune , mssipune@gmail.com,+91 93268 50622
Awareness, Inclusion, Counselling and Rehabilitation for people with Multiple Sclerosis and other neurological condition
Sowkhya Physiotherapy Centre, No. 21, Puliyakulam Road,Next to Vidhyaniketan School, Coimbatore 641 045 / swargafoundation1@gmail.com
Dr. Guruprasad TS, Founder Trustee Ph: 97902 73063
Multi Faceted approach to care and control of Thalassemia
KG 1/97, Vikas Puri,, New Delhi-110018 / ntws2019@gmail.com/drjsarora2016@gmail.com
Dr. J S Arora,General Secretary,9312273959
Support and Diagnostic services for persons with Thalassemia and Sickle Cell Anemia
Door No. 8-13-95/1/C, Opp Lane to National Police Academy, Raghavendra Shivarampally, Rajendra Nagar, Hyderabad 500052, Telangana / tscsap@gmail.com
Dr. Suman Jain, CEO and Secretary, +914024560011/+914024403783/+914029880731
Blood Donation, Early intervention and prevention of Thalassemia major and minor
Think Foundation, A-101, Valmiki Apartments, Sunder Nagar, Kalina, Santacruz (East), Mumbai 400 098 / vinay@thinkfoundation.org
Vinay Shetty, Permanent Member of the Voluntary Blood Donation Committee of the State Blood Transfusion Council, +91 98201 46448
Community owned enterprise for sustainable health care for indigenous tribes and community members affected with Disability and Sickle Cell Anemia
Post Box No.20,GUDALUR, The Nilgiris District, Tamilnadu.643 212 / ashwinigudalur@gmail.com
Diagnostic testing, evaluation, counseling and supportive services to individuals and families at risk for Sickle Cell Disease and its variants.
Plot No. 71, Opposite Shraddhanand Peth Anathalay, South Ambazari Road,Nagpur, Maharashtra - 440010 / sicklescan17@gmail.com
Dr. Mrs. A. V. Shrikhande, President, Phone : 0712-2236988, Mobile : 9421695835
Awareness and Advocacy for rights of persons with rare diseases and policy change to accelerate necessary supporting infrastructure and services
ORGANIZATION FOR RARE DISEASES INDIA. NO.180/2, Flat No 114, Swarna Silicon Minos, Basavanna Nagar, Hoodi, Bangalore – 560048, KA / contactus@ordindia.in
Mr. Prasanna Kumar Shirol, prasanna@ordindia.in
represents interests of all rare diseases, individual patients, patient support groups, health policy advocates and health care provides for rare diseases
U.S.A. 699 Apache Lane,St. Paul, MN 55120 / info@i-ord.org
Mr. Syed Sanaullah, Management Committee
Locate, Educate, treat and support Persons with Hemophilia through help of several chapters across India
A-128, Mohammadpur (Behind Bhikaji Cama Place), New Delhi - 110066 / ceo@hemophilia.in
Mr. Pawan Madhukar, CEO, HFI / Mr. Mukesh Garodia, President HFI , mukesh@hemophilia.in
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