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 http://www.samataxiagroup.org AUTISM SPECTRUM DISORDERS More Special Children Support Groups
Aashayein - ASHA for Autism - ASHA Charitable Trust Action For Autism Autism Society of India Blue
Rose School - Autism India Today Institute for Remedial Intervention Services - IRIS SOPAN and Samarpan Centre for Autism Spectrum Disorders Ummeed Child Development Center 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 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 Hemophilia Regional Council - East Hemophilia Regional Council - West Hemophilia Regional Council - South LIVER DISEASES Children's Liver Foundation LYSOSOMAL STORAGE DISEASES (LSDs are a group of over 50 inherited rare lysosomal enzyme deficiency diseases) LSD Support Society - LSDSS 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 MERD INDIA Metabolic Errors and Rare Diseases Organization of India
Mr. Vikas
Bhatia Mrs. Neelam Shroff MOTOR NEURON DISEASE Motor Neuron Disease Association of India 40 Kolagarh Road 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 Indian Association of Muscular Dystrophy (IAMD) M.I.G.72, APHB Colony, Machilipatnam 521 001, Andhra Pradesh Phone: 91-086-722817 Indian Muscular Dystrophy Society Jeevan Foundation Muscular Dystrophy Association India Muscular Dystrophy Foundation India Sundaram Medical Foundation PAINFUL BLADDER SYNDROME - INTERSTITIAL CYSTITIS International Medical Adviser -International Painful Bladder Foundation Nagendra Mishra, MD PARKINSONS DISEASE Parkinson's Disease & Movement Disorder Society 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 Conatct: Mrs. Vinita Jindel
THALASSEMIA Thalassemics India
A-9, Nizamuddin West
New Delhi - 110 013
0091+11 41827334,
46595811, 9810019950
Email: thalcind@yahoo.co.in
National Thalassemia Welfare Society CHILDREN IN NEED OF SPECIAL CARE - CARE, TREATMENT AND TRAINING More Special Children Support Groups The Research Society Sewri Hill, Sewri Road Pearl Special Needs Foundation
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. 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) Foundation for Research on Rare Diseases and Disorders
C252 Kandasamy Salai Periyar Nagar, Chennai 600 082, India Email: contact@rarediseasesindia.org |
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