Helpline : +91 8892 555 000
Email : contactus@ordindia.org

Patient Advocacy Groups

Sl. No Name Description
1. AKU Society, ChennaiDisease : Alkptunoria
2 Amrutavarshini, KochinDisease: Osteogenesis ImperfectaWebsite: http://amrithavarshini.org/

 

 2PAmrithavarshini Charitable Society is a voluntary organization that works for people with Osteogenesis Imperfecta (OI) or brittle bone disease. It is a community initiative of people with OI, parents, relatives and voluntary associates.
3. Association For Patients With Rare Eye Diseases, BangaloreDisease: Rare Eye Diseases
4. CAH – Indian Chapter, DelhiDiseases: Congenital Adrenal Hyperplasia (CAH)
5. Cystic Fibrosis India, BangaloreDiseases : Cystic Fibrosis,Website: http://cysticfibrosisindia.com/ 5P
6. Muscular Dystrophy Foundation IndiaDisease: Muscular DystrophyWebsite:  http://dartindia.in/ Clipboard01

Dystrophy Annihilation Research Trust [DART] is the first lab in India focusing on Muscular Dystrophy (MD).

DART was founded by RS Anand who has been tirelessly working towards a deeper understanding on Muscular Dystrophy since discovering his son was affected by DMD in 2003. DART was established in 2012 with an idea of providing support to affected children and their families in dealing with muscular dystrophy. Anand is the founder of DART and current President.

7. Fetal Care Research FoundationDisease : Rare Disease
8. GNE Myopathy InternationalWebsite: http://gne-myopathy.org  8PGNE myopathy is a rare and debilitating genetic disorder that manifests itself as progressive muscle weakness in young adults, starting with foot drop and eventually severely affecting the use of all muscles of the legs and hands. The disease is a result of a number of different homozygous and compound heterozygous mutations in the GNE gene. These mutations lead to loss of the natural function of the gene to synthesize sialic acid, an important sugar needed by our body for many functions, including muscular activity. The GNE gene mutations preferentially affect muscle cells leading to progressive loss of muscular function. Mutations in this gene have been reported worldwide and do not seem to be restricted to any particular region or ethnicity. However, accurate diagnosis of the disease requires genetic testing that is inaccessible to most patients in the developing world, leading to misdiagnosis and lack of disease awareness. At present a cure for the disease does not exist, although clinical trials are ongoing.
9. Hemophelia, BangaloreDisease : Hemophelia
10. Hitesh Kakkad, MumbaiDisease : Invisible disorder
11. India Spina Bifda Society, JaipurDisease : Spina Bifda 
12. Indian Patients Society for Primary Immunodeficiency, BhubhaneswarDisease: PIDWebsite: http://www.ipspiindia.org/

 

12PIndian Patients Society for Primary Immunodeficiency – IPSPI is a National non- profit organization for Primary Immunodeficiency Disorders, formed in 2004 and was registered in 2005 under Societies Registration Act vide regn, no 22125/106 of 2005/2006. IPSPI is affiliated to IPOPI- International Patients Organization Immunodeficiency. The initiative for foundation of IPSPI was taken by Mrs. Rubby Chawla and Mr. Rakesh Chawla by their contribution of time and hard work. IPSPI strives forward to fulfill its aims & objectives inspite of hardships. IPSPI is privileged to have Dr. Surjit Singh, Add. Prof of Ped. Allergy & Immunology, Adv. Ped. Centre, PGIMER Chandigarh, as Honorary Advisor. His motivation helped to take urgent initiative for the formation of IPSPI. All donations to IPSPI are exempt from Income Tax u/s 80G of I.T. Act 1961.
13. Metabolic Error and Rare Diseases Organization of India, JaipurDisease : IEM,Website : http://www.merdindia.com/
14. MSSI,ChennaiDisease : Multiple Scloriosis
15. Pompe Foundation, BangaloreDisease: Pompe,Website: http://www.pompeindia.org

 

15PPompe foundation is a trust started by the parents of a little girl who is fighting against this orphan disease, Pompe foundation is here to help ease the burden of patients and parents of Pompe. Mr. Prasanna Shirol and Mrs. Sharada Shirol, It took 7 years to diagnose the deadliest rare disease Pompe for their daughter Nidhi for the first time in India after visiting several hospitals. Treatment and taking care of his daughter was their next challenge and was beyond their reach as the cost of treatment is prohibitive. They have been struggling from last 12 years to take care of their daughter. Pompe, being the deadliest and costliest disease among 40+ (LSD) to treat and maintain and the no of patients being increased in India due to increased awareness among doctors. They felt the immediate need to support the parents of Pompe children before they collapse economically and psychologically, hence the birth of Pompe foundation. Maj. (Retd) S.C .Choukimath, the main motivation to start this foundation to support and share our experience of taking care of Pompe Patients. He is into several social activities this being supported by Mr. Sanjay Belawal.

Our vision is Campaign for early diagnosis and effective, affordable and safe therapies for Pompe in India and support to all patients, families, caretakers and others with interests in the related diseases

16. Primary Immunodeficiency Patients Welfare Society, BangaloreDisease: PID,Website : http://www.pidindia.net

 

16PThis society came in to existence in the month of April 2012 but the Society got registered in the month of 28th September 2012. Under its registration number: SOR/GNR/42/2012-13.The PIDPW Society Is Formed By The Parents Of The Children Suffering From “Primary Immuno Deficiency Disorder” With The Support Of Our Founder Members who are kind hearted people who had taken up the tough path in life in helping out the suffering PID children.
17. Rare Disease India, ChennaiDisease : Infromation Portal
18. Rett Syndrome, DelhiDisease : Rett Syndrome,Website: http://www.rettsyndrome.in/ 18PIndian Rett Syndrome Foundation is a national association of Parents, Families, Doctors, Scientists, Health professionals and care takers of children with Rett syndrome and was established on 27th January, 2010.
19. Samskara Foundation, HyderabadDisease: RDWebsite: http://www.samskarafoundation.in/

 

20. Seek A Miracle Ataxia Group, HyderbadDisease : Atexia,Website: http://seekamiracleataxiagroupindia-samagindia.webs.com/
21. Sirogen Group, AhmedabadDisease: Sirogen Syndrome,Website: http://www.sjogrensindia.org/

 

21PSjögren’s India (SI), managed by patient volunteers, is dedicated to enabling patients and their families to “Live Well with Sjögren’s Syndrome (SS)”. SI works for empowering patients through education, creating better public awareness and providing a forum for interaction with healthcare professionals. Support in terms of counseling and lifestyle management tips is extended to patients/families through personal/group, telephonic and virtual interaction. SI is inspired by the Sjögren’s Syndrome Foundation (SSF) in USA.
22. Thalasemia, BangaloreDisease : Thalasemia
23. With Aarya, MumbaiDisease : Nelmann Pick,Website : http://www.withaarya.in/

 

23PWith  aaraya is a non profit making organization which allows us to raise awareness and fund for the research, therapies and medication. This network has been created to bring together people who would like to help find the cure for Niemann Pick C.
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