Join our PAG group in India and Explore more ways of supporting your patients.
ORDI founded in Feb 2014, is a patient-centered non-profit organization with the mission to improve health of patients with rare diseases around India through awareness, advocacy, collaborations and information dissemination. ORDI represents the collective voice of all patients with rare diseases in India to effect government policy making. ORDI has identified and taken on the grand challenges facing the rare diseases community in India and is committed to systematically and holistically addressing those challenges.
ORDI’s PAG membership provides a united force for advocacy, public awareness, Policy issues, research and medical advancements, and support to support estimated 70 Million Indians living with rare diseases. This also provides access to whole range of support and infrastructure ORDI is creating.
PAG Application Form: Download
Any organization / support groups who is/are working to support any of the 7000+ Rare Diseases in a State or national level in India.
Process:
- Fill up the PAG membership Application form
- Send the scanned copy with all the relevant documents
- We shall confirm within 10-15 working days after reviewing the documents.
We look forward to working with you to help patients living with rare diseases!
PAG Membership fees – Rs 2400 /year.
Member PAGs
Our Vision
FOP Trust of India will strive to support & provide information to FOP patients and families across India, and increase awareness about FOP in India. To create a knowledge bank among the medical fraternity, on the symptoms, diagnosis and medical management of FOP. Also, to collaborate with other Rare disease groups to help this community of patients and families.
Our Mission
- Help families/ patients connect with relevant doctors / hospitals and arrange for consultation / treatment /Medicine.
- Help families/ patients with Equipment’s /beds / home modifications/ wheelchairs. Etc
- Raise funds to help find a cure by giving grants to research organizations /universities and any other entities.
- Collaborate with other Rare disease groups to mutually support each other to obtain Government approvals for clinical trials, medication funding, regulatory approvals
- Create awareness about FOP via Social Media, Doctor reach out, Incorporation in Govt protocols.
- Work to get FOP to be categorized as a rare disease and help families avail Govt assistance for treatment / management
- Get Govt regulations to make all building / Train , bus and Air travel Disability ,friendly / wheel chair accessible.
- Any other activities which are beneficial to the rare diseases community as a whole.
BharathMD Foundation
BharathMD Foundation is a non-Government voluntary Company registered under the ROC. CIN: U85300TG2022NPL16033 by 4 mothers of DMD kids We are a Parent Support group formed to create awareness about muscular dystrophy amongst different stakeholders in particular and to the society at large. Our kids are diagnosed with a rare genetic disorder called Duchenne Muscular
Dystrophy (DMD) which doesn’t have a CURE so far.
Our Vision is to find affordable solutions to Muscular Dystrophy at the earliest and to be a facilitator in improving the quality life of the affected.
Our Programs till date include
1. Awareness camps to parents and Doctors
2. Conducting educational webinars to parents & patients on Genetics, Cardiology Care , Pulmonary care, Nutrition care & physiotherapy
3. Physical camps on Genetics Screenings ,Physio , Cardio and Neuro
4. Recreation activities like introduction of Boccia games (only Physical game for wheelchair borne) and outing with caregivers
5. Sponsoring, Groceries, educational, Medical needs , Nutrition diet and Assistive devices for few needy patients
“Scleroderma India”
“MERD India Foundation”
The mission of MERD INDIA FOUNDATION is to promote awareness about Inborn Errors of Metabolism and to provide Moral as well as Informative Support to the parents of such children and to campaign for compulsory newborn screening in India
About MERD INDIA FOUNDATION (A ‘Not for Profit Company’ Registered under Section 8 of the Companies Act, 2013) Metabolic Errors and Rare Diseases Organization of India (MERD India) was conceived by two parents – Vikas Bhatia and Poonam Bhatia ,who wanted to set up a parent support and advocacy organization in India. The vision was to have a forum of like-minded individuals who can promote & help spreading awareness about significance of early detection of Inborn Errors of Metabolism and Rare Diseases, and thereby save and support thousands of lives.
“ALS Care & Support Group, India”
Satvinder Kaur is a qualified B.Sc. (Med), Masters in Computer Management and working as Software Architect in IT since 2005.
Life took a drastic turn in 2008 when her mother got diagnosed with ALS( Amyotrophic lateral sclerosis) due to which she started working from home, taking care of her at Ventilator at home along with full support of her sister Sukhvinder (2008-18). Numerous challenges and learnings gained in this phase led both of them to pen-down alslifemanagement.weebly.com and built the foundation of ‘ALS care & support group India’ in 2015. Gradually with time, CALS (Caregivers of ALS) and PALS( Person with ALS) in India started connecting to this platform one by one, for support.
Presently, this ‘ALS C&S’ group (they prefer to call this ‘family’) continues to empower hundreds of its members with valuable knowledge which is growing everyday with each other’s learning and experiences. This is helping the ALS community in India to walk through this tough journey with care and support TOGETHER.
Their purpose in life is to create an effective support system for people with ALS in India. Moreover, this ALS C & S family is building a united force to bring revolution for patient’s advocacy, awareness, govt policy issues and research for ALS in India. Efforts are continuously done to meet scientists, doctors, researchers in India/world who can help in walking towards the path of finding treatment for this fatal, progressive neurodegenerative disease.
Mission : Building a family of PALS and CALS with compassion, care and Support.
Satvinder Kaur and Sukhvinder Kaur
“ANGELMAN SYNDROME”
Pooja Joshi Bhadrige is the Founder Director of Angelman Foundation India (AFI). An MBA by qualification, a banker by profession and now a full time mother. In 2015, her son Yug got diagnosed with Angelman Syndrome.
In the year 2017, she started the first ever website in India for Angelman parents and kids. Since then she decided to be the voice of all Angelman parents in India. She founded the AFI and got it registered in November, 2020.
She is now dedicated to bring more awareness in India and build an AS family which can work towards the betterment of their kids.
“Fragile X Society”
Shalini Kedia is the Chairperson of the Fragile X Society in India. Over the past two decades she has helped nearly 12,000 families, She is the co-author of the guidelines issued by IAP for Fragile X in India and a TEDx speaker.
Dispelling ignorance on Fragile X, a condition which impacts millions worldwide is something she strives hard for. Making a difference in the lives of those impacted is her mission in life.
TAMAHAR
Tamahar, a registered non-profit organization was started in 2009 by Mrs.Vaishali Pai, a trained Occupational Therapist with a vision to prevent & alleviate developmental disability in children with brain damage.We work with children aged 0 & upwards, with developmental disabilities (Autism, Rare Genetic Diseases, Cerebral Palsy, etc) & their families, through holistic intervention practices based on standardized assessment protocols. We have impacted 500+beneficiaries (direct as well as indirect) till date .We work across four main verticals Children | Families | HRD | Awareness & Advocacy + R&D.
Multiple Sclerosis (MS) is an auto immune condition that affects the Central Nervous System. This unpredictable condition debilitates young people in the prime of their lives. MS is often referred to as the mysterious crippler of the young adult as it generally strikes its victims between the ages of 20-40 years. Symptoms of this condition are both visible and invisible (eg: extreme fatigue, visual disturbance, cognitive and mobility issues and in extreme cases total paralysis). It is a crippling disease for which no cure has been found till date.
Multiple Sclerosis Society of India(MSSI) is a Charity Organization helping patients afflicted with Multiple Sclerosis (MS). It was established in India in July 1985. Our Society is registered under the Societies Act of 1860 and the Bombay Public Trust Act of 1950, and is a voluntary organization looking after the interests of patients afflicted with Multiple Sclerosis. Since 1985 MSSI have grown gradually and today nine regional chapters are serving and addressing needs of Multiple Sclerosis persons locally – Bengaluru, Chennai, Delhi, Hyderabad, Indore, Kolkata, Mumbai, Pune & Thiruvananthapuram
Pompe foundation is a Trust started by the parents of a little girl who is fighting against this orphan disease, the Pompe foundation is here to help ease the burden of patients and parents of Pompe.
Mr. Prasanna Shirol and Mrs. Sharada Shirol. Nidhi 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
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
Objective
- To support all the parents for treatment and Supportive in time.
- Advocacy with Govt for a proper Health care model for Pompe Disease in India.
- To create awareness among medical fraternity.
- To promote early diagnosis and new born screening.
- To share the experience among the Pompe Community.
Pitru Aastha
Cystic Fibrosis Trust
Parent Project Muscular Dystrophy (PPMD)
Individual Rare Disease Advocate
RD Advocate: Alagille Syndrome
RD Advocate: MRKH (and related disorders)
Ms. Snehal ChoudhariRD Advocate: Alport Syndrome(and related disorders such as FSGS)
RD Advocate: “MNGIE”
Mr.Khushal
Khushal is a tech enthusiast. In 2018, he came to know that one of his cousins was diagnosed with genetic rare disease “MNGIE”, which even at the present moment is rarely known to any neurologist in India. And due to lack of awareness, its diagnosis was also delayed. Going deep his uncle and he came to know that most of the rare disease patients in India struggle to get proper treatment and few of the diseases have not even proper diagnosis facility in India.
Together in collaboration with his uncle, they have started a Facebook page “MNGIE India “to collect active MNGIE diagnosed patients across the globe. And merely within couple of months they were flooded multiple messages seeking for help and treatment for this deadly disease.
In India specifically, due to lack of testing facility the diagnosis of this disease is often delayed or in some cases it is even misdiagnosed. To rectify this problem they have taken help of ORD Group, by updating the neurologists and medical diagnosis center about this disease, so that patients of this disease are not misdiagnosed. We hope the collective efforts of ORD and our group will help the rare disease patients across INDIA in fruitful way.
Link of our groups are below:
Email-mngieindia@gmail.com
http://www.facebook.com/Mngieindia
http://www.twitter .com/MngieIndia
http://www.instagram.com/khushagr
http://www.instagram.com/mngieindia
https://www.linkedin.com/in/khushal-agarwal-672217109
RD Advocate: Ms. Madhumita Bhattacharya
In recent days, mental health has turned heads and been given precedence over physical
health. In addition to recognizing the common mental health aberrations that deserve to be
counselled, rare disorders that have been identified as the outliers in our society were never
much prioritized.
A passionate mental health practitioner herself who is inclined towards ethical mental health
care practices, Madhumita has seen the last decade counselling clients from diverse
backgrounds, nationalities and cultural outlook. She’s fighting with a rare condition, known
as Scimitar Syndrome since her birth, though it wasn’t diagnosed as that till a few years back. But she prefers to wear the smile at all times while delivering quality therapy sessions through a typical work day. She can resonate with her fellow rare disease warriors and their near and dear ones, and can understand the implications on their mental health. Madhumita is a M.Sc, Psychology graduate from the University of Calcutta and has several accolades to her name till date. She is also trained in Clinical Hypnosis (Level 2) under Dr.Jini K. Gopinath, Advanced REBT under Dr. Debbie Ellis, Alternative Therapies in Counselling (Meditation) and did her foundation course on DMT from Pradeep – Centre for Autism Management. She has worked with titles of the likes of Apollo Health and Lifestyle,
Apollo Hospitals and Apollo Cradle, Recoup Rehabilitation Centre, Medall Healthcare,YourDost, Maven Clinic and Plum. With almost all 5-star ratings and reviews bestowed by her clients, she’s been a known and preferred friend of choice among her clients. She’s also a mom to 2 for kids and native to Bangalore since the last 8 years.
Mail Id : madhumita.b88@gmail.com
