supportgroups
Rare diseases and disorders patient advocacy groups in India
A partial database of various support groups are listed here. We have identified multiple organizations distributed across India for certain rare diseases. Support group addresses, contact numbers or websites may have changed.
If you like your organization be listed here or like change in contact information below, send us your request
at: http://www.rarediseasesindia.org/contact
This page last updated December 8, 2014
ALZHEIMER'S DISEASE
Alzheimer's and Related Disorders Society of India - ARDSI
Guruvayur Road, P.B.No. 53
Kunnamkulam 680 503, Kerala
Phone: 91-4885-223-801
Fax: 91-4885-222-347
984 619 8471, 984 619 8473, 984 619 8786 - Helplines
Email: office@alzheimer.org.in, nationaloffice@ardsi.org
This Society has affiliated Chapters in several states in India
ATAXIA
Seek A Miracle Ataxia Group - SAMAG
House no: 5-95 / 20, Sri Laxmi Nagar Colony, Old Alwal,
Secunderabad 500 010, Andhra Pradesh
Email: sam_ataxiaindia@yahoo.com
AUTISM SPECTRUM DISORDERS More Special Children Support Groups
Aashayein - ASHA for Autism - ASHA Charitable Trust
L-76/A, (Opposite to L-50) Kirloskar colony, HBCS 3rd Stage, 4th Block
Basaveswarnagar, Bangalore 560 079, Karnataka
Mrs.Jayashree Ramesh - 9343764415– info@ashaforautism.com
Mrs. Chandrika Seshadri - 9731563925
Ms. Bhavani - 9448878686 – bhavaniprao@gmail.com
Action For Autism
Pocket 7 & 8, Jasola Vihar
New Delhi 110025
91-11-65347422, 91-11-40540991, 91-11-40540992
Email: actionforautism@gmail.com
FAX 91-11-40540994
Autism Society of India
60, Vittal Mallya Road,
Bangalore 560 001, Karnataka
email: autismsociety@gmail.com
call: Bangalore 080-23225279
http://www.autismsocietyofindia.org
Blue Rose School - Autism India Today
# 5 Hargobind Nagar
Patiala
Punjab
Conatct:
Harpreet Kaur Bedi
Phone: 9356767367
Email: autismindiatoday@gmail.com
Institute for Remedial Intervention Services - IRIS
Mythily Chari, M.Ed., Ed.S.
120 Defence Colony, Guindy P.O.
Chennai 600 032, Tamil Nadu
Tel: (044) 2233-1421
SOPAN and Samarpan Centre for Autism Spectrum Disorders
M.G.Municipal School
3rd Floor, M.G.Road
Near Kesarkar Garden, Ville Parle(E)
Mumbai 400057, Maharashtra
Tel : 91-22-6504 3998
E-mail: info@sopan.org
samarpan@sopan.org
http://www.sopan.org/home.html
Ummeed Child Development Center
Ground Floor, Mantri Pride,
1-B, 1/62, N.M. Joshi Marg, Subhash Nagar,
Near Chinchpokli Station, Lower Parel,
Mumbai 400011, Maharashtra
Tel : 65528310/65564054
More Special Children Support Groups
CONGENETAL ADRENAL HYPERPLASIA
Support Group - CARES Foundation
Matthew Jacob
00 91 938 7818385
00 91 484 2343395
jacobbhai@gmail.com
Sanjeev Sahni
091-11-98-11774487
Sks_ps@hotmail.com
DOWN SYNDROME
Down Syndrome Federation of India
New No. 11 (Old No. 6), Justice Sundaram Road
Mylapore, Chennai 600 004.
Phone : +91-44- 4211 2249
Fax : +91-44-2852 0717
Email: mathrumandir@gmail.com, rekharami@gmail.com
Web: http://www.downsyndrome.in
Down’s Syndrome Care Association (DSCA)
Genetic Health & Care Centre
7, Mahatmanagar, Near ABB Circle
Triambakeshwar Road, Nashik- 422007
Maharashtra, India
Phone: +91 253 6604156,
Phone & Fax: +91 253 2350626, Mobile: +91 9860358501
Email: drchopade@dscaindia.org, drchopade@hotmail.com, harish_h@dscaindia.org, info@dscaindia.org
Parents of Down’s Syndrome
A-3, Kherwadi Housing Society
R T O Road, Near Four Bunglows
Andheri (W), Mumbai 400053
Email: contact@podsindia.com, podsindia@Rediffmail.com
Phone: +91 22 634 3530
Web: http://podsindia.org
HEMOPHILIA
Hemophilia Federation India
Rtn. Wg. Cdr. (Rtd) S S Roychoudhury (CEO)
A-128, Mohammadpur (Behind Bhikaji Cama Place)
New Delhi-110 066.
Phone: +91-011-2617 4020, +91-011-2617 5791
Fax: +91-011-2617 7209
Email: ceo@hemophilia.in
The Hemophilia Society Calcutta Capter - Main Center
Singhabari, Kalikapur, E. M. Bypass, Kolkata 700 099, West Bangal
The Hemophilia Society Calcutta Capter - Extended Center
469 VIP Nagar Gouranaga Pally, Kolkata 700100, West Bengal
Mail: hscc@vsnl.net, hscckol@gmail.com
Phone: +91 33 24263739/ 8273 / 4220, +91 33 32576451
Phone: +91 33 32576451 - Extended Center
Fax: +91 33 24263739/ 827
Hemophilia Regional Council - East
Mr. Ajoy Roy
Hemophilia Society - Durgapur Chapter, Satyajit Ray Sarani, City Centre
Durgapur 713216, Burdwan District, West Bengal
Tel: 0343-2542182,
Mobile: +91-9474640064
Email:durgapur@hemophilia.in
Hemophilia Regional Council - West
Dr. Devila Sahu
25, Shankar Sagar, Sophia College Lane, Breach Candy,
Mumbai - 400026, Maharashtra
Tel: 022-24158315 / 16
Mobile: +91-9324259810
E-Mail: rccwest@hemophilia.in
Hemophilia Regional Council - North
Mr. Manoj Sharma
14/56, Chakai Lattu Gali, Fountain, Agra - 3, Uttar Pradesh,
Mobile: +91-9719214748
E-Mail:rccnorth@hemophilia.in
Hemophilia Regional Council - South
Dr. Anburajan
Peace Health Centre, 48 H/5 Bypass Road, Near New Bus Stand
Tirunelveli 627007, Tamil Nadu
Mobile:+91-9442612137
E-Mail:rccsouth@hemophilia.in
LIVER DISEASES
Children's Liver Foundation
O-18, Nav Bhavna, Veer Savarkar Marg
Prabhadevi, Mumbai 400025
Email: pedliver@gmail.com
Phone: +91-22-24222160 Monday - Friday 4.00 - 8.00 pm; Jyoti 098923 30575
Web: http://childrenliverindia.org
LYSOSOMAL STORAGE DISEASES (LSDs are a group of over 50 inherited rare lysosomal enzyme deficiency diseases)
LSD Support Society - LSDSS
C/o Center for Human Genetics,
Biotech Park, Next to Arvind Mills,
Electronic City, Phase 1,
Bangalore 560 100, Karnataka
Mob: 9980133300
Pompe Foundation
Flat No 114, Swarna Silicon Minos
Basavanna Nagar, Hoodi
Bangalore 560048
Contact: Sharada Shirol, Treasurer
Mobile: +91 9343403400
E mail: Sharadashirol@gmail.com
Web: www.pompeindia.org
MARFAN SYNDROME
International Federation of Marfan Syndrome Organizations
Marfan Syndrome Organization in Assam is a member of the Federation.
Mr. Chirarnjib Nath
South Hazarapar, Tezpur, 784 001, Assam.
sc.nath@gmail.com, ck.nath15@yahoo.com
MERD INDIA
Metabolic Errors and Rare Diseases Organization of India
Mr. Vikas Bhatia
Mobile: 9784817000
Email: vkrb@rediffmail.com
Web: http://www.merdindia.com/
Mrs. Neelam Shroff
Email: neelamshroff@gmail.com
MOTOR NEURON DISEASE
Motor Neuron Disease Association of India
40 Kolagarh Road
Street No. 5
Dehradun, Uttarakhand -248001, India
Contact: Nicky Bhagat
Tel: +91 (135) 2754487
Email: nikinam@gmail.com
MULTIPLE SCLEROSIS
Multiple Sclerosis Society of India - MSSI
Multiple Sclerosis Society of India
S-56, Panchshila Park
New Delhi – 110017
Contact:
Mrs. Bipasha Gupta – 09312210645
Mrs.Sheela Chitnis-09819054998
Mrs. Meenakshi Bhujwala – 09811012334
Email- anilbipasha@rediffmail.com
MUSCULAR DYSTROPHY
All India Muscular Dystrophy Association
Anaj Mandi, Nabha Gate
Patiala 147 001, Punjab
Phone: 91-175-2215786
Email: contact@mdaindia.com
Indian Association of Muscular Dystrophy (IAMD)
President IAMD
C/O M/s Stich-n-Style
Hospital Road, Solan 173 212, Himachal Pradesh
Phone: 91-1792-223183 / 220212
Email: info@iamd.org
Indian Muscular Dystrophy Association
M.I.G.72, APHB Colony,
Machilipatnam 521 001, Andhra Pradesh
Phone: 91-086-722817
Indian Muscular Dystrophy Society
16, Tolaknagar
Paldi, Ahmedabad 380007, Gujarat
Jeevan Foundation
Head Office 12/5, Sandilya Apartments, Jagadambal colony, 2nd Street,
Royapettah, Chennai-600014, Tamil Nadu.
Tel: +91 44 28474400 Fax: +91 44 43526647
Mail: help@jeevanfoundation.com
http://www.jeevanfoundation.com
Muscular Dystrophy Association India
C/O V.J.Clinic,
New no: 6, (Old 21), Fourth Cross Street,
Sastri Nagar, Adyar
Chennai 600 020, Tamilnadu
Phone: 91-90032 95482
Email: mdaindia.org@gmail.com
Muscular Dystrophy Foundation India
C/o. People's Watch,
No.6, Vallabhai Road,
Chokkikulam, Madurai 625 002, Tamilnadu
Phone: 91-9994368550
E-mail:louis@mdfindia.org
Sundaram Medical Foundation
A Network Center of the Cooperative International Neuromuscular Research Group
Shanthi Colony, 4th Ave.
Anna Nagar, Chennai 600 040, Tamilnadu
Phone: 91-44-26268844
PAINFUL BLADDER SYNDROME - INTERSTITIAL CYSTITIS
International Medical Adviser -International Painful Bladder Foundation
Nagendra Mishra, MD
Kidney and Urology Hospital, Interstitial Cystitis Centre
2nd floor, Shantam Complex
Gurukul Road, Memnagar
Ahmedabad 380 052, Gujarat
Tel: 079- 27497083
Fax: 079-40054104
nagendraad1@yahoo.com
PARKINSONS DISEASE
Parkinson's Disease & Movement Disorder Society
6, Jasville, 1st Floor
Opp. Liberty Cinema, Marine Lines
Mumbai - 400020, Maharashtra
Phone: 22007667/9967774944
Email: mail@parkinsonssocietyindia.com
http://www.parkinsonssocietyindia.com
SJÖGREN’S SYNDROME
Sjögren’s India
Ms. Kirtida Oza
701, Vatsaraj, Opp. Shraddha School,
Jodhpur Gam Road, Ahmedabad 380 015, Gujarat
Tel: +91 79 26922254
Email: kirtidaoza@gmail.com, kirtidaoza@hotmail.com
Ms. Purvi Doshi
Ramila Baug, Bungalow No.27
Basant Bahar - III, Bopal-Ghuma Rd.
Bopal, Ahmedabad 380 058, Gujarat
Mobile: +91 9510170002
Email: purvird@gmail.com, purvirakshit@yahoo.com
SPINA BIFIDA
Indian Spina Bifida Association
G-14, Krishna Marg,C-Scheme
Jaipur 302001, Rajasthan
Conatct: Mrs. Vinita Jindel
Email: vinita@indiaspinabifidaassociation.org
Web: http://www.indiaspinabifidaassociation.org
THALASSEMIA
Thalassemics India
A-9, Nizamuddin West
New Delhi - 110 013
0091+11 41827334, 46595811, 9810019950
Email: thalcind@yahoo.co.in
Web: http://www.thalassemicsindia.org
National Thalassemia Welfare Society
KG 1/97 Vikas Puri
New Delhi 18
Tel: 011-25507483, 25511795
Mobile: 09311166710,711,712
Web: http://www.thalassemiaindia.org
CHILDREN IN NEED OF SPECIAL CARE - CARE, TREATMENT AND TRAINING More Special Children Support Groups
The Research Society
This organization serves children and older individuals with mental challenges and other related disabilities
Sewri Hill, Sewri Road
Opp. Abhyudaya Nagar Bldg. No. 12
Near Kalachowki Police Station
Mumbai 33, Maharashtra
Tel: (91 22) 2470 1231
Fax: (91 22) 2470 2285
Email:admin@theresearchsociety.org
Web: http://www.theresearchsociety.org
Pearl Special Needs Foundation
This organization promotes equal access and opportunity for individuals who are differently abled
School Address
53 Sharadanagar Society,
Vikashgruh road. Opp. Premvardhank Flats.
Nr Dharnidhar Temple, Shreyas Bridge.
Paldi, Ahmedabad 380 007
Phone: 91-9408507008, 7874866681
Email: pearl@psnf.org
Web: www.psnf.org
Branch Office address
403, Arth Apprtment. 35 B M M S. Nr.Jalaram mandir,
Paldi Ahmedabad - 380 006.
Madhuram Narayanan Centre for Exceptional Children
This organization provides early intervention services to children with developmental delays/mental retardation, with autistic tendencies, cerebral palsy, Down Syndrome, Attention Deficit Hyperactive Disorders, microcephaly, hydrocephaly.
No. 1, Giriappa Road, Opp. Bala Mandir Kamaraj Trust,
T.Nagar, Chennai – 600 017
Tel : +91-044-2815 1840 / 91-044-2815 1843
Fax : +91-044-2815 1843.
Email : mnc.chennai@gmail.com
Contact persons: Mrs. Jaya Krishnaswamy, Mr. S. Krishnan.
More Special Children Support Groups
PAN RARE DISEASES UMBRELLA ORGANIZATIONS
Indian Organization for Rare Diseases (IORD)
Plot 397, #22b
Jubilee Hills, Hyderabad 500033, India
Web: http://www.i-ord.org
Organization for Rare Diseases India (ORDI)
Phone: +91 8892 555 000 - Rare Disease Care Center
Email: contactus@ordindia.org
Foundation for Research on Rare Diseases and Disorders
C252 Kandasamy Salai
Periyar Nagar, Chennai 600 082, India
Email: contact@rarediseasesindia.org