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

http://www.alzheimer.org.in

http://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

http://www.samataxiagroup.org

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

http://www.ashaforautism.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

http://www.autism-india.org

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

http://www.autismindia.com

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

http://www.ummeed.org

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

Web: http://www.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

http://www.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

http://hsccindia.org

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

contactus@lsdss.org

http://lsdss.org/

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

http://www.marfanworld.org

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

http://www.mssocietyindia.org

MUSCULAR DYSTROPHY

All India Muscular Dystrophy Association

Anaj Mandi, Nabha Gate

Patiala 147 001, Punjab

Phone:  91-175-2215786  

Email: contact@mdaindia.com 

http://www.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 

http://www.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

http://imdsindia.org/

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

http://www.mdaindia.org

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

http://www.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

http://www.smfhospital.org

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

http://www.sjogrensindia.org

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

Web: http://www.mncindia.org

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

Web: http://www.ordindia.org

Foundation for Research on Rare Diseases and Disorders

C252 Kandasamy Salai

Periyar Nagar, Chennai 600 082, India

Email: contact@rarediseasesindia.org

Web: http://www.rarediseasesindia.org