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 1200 /year.
List PAG’s In India
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 and patients on
Genetics, Cardiology Care , Pulmonary care, Nutrition care and
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
“CIRM India”
Founder : Tina
Mission Statement
- To preserve and protect the health of and to relieve persons affected by ichthyosis and any associated condition.
- To enabled the basic knowledge of medical professionals and the general public on the subject of ichthyosis and its implications for the family.
- To promote research into the management of ichthyosis and to publish the useful results thereof, and to support organizations promoting research into ichthyosis.
Core Values
- Compassion – We are a caring organization recognizing the unique challenges faced by our community and will provide support with kindness and empathy.
- Hope – While celebrating today’s strengths and successes, we strive to convey to all individuals affected by ichthyosis that the future will be filled with friendship, support and a cure for ichthyosis.
- Integrity – We will conduct ourselves in a trustworthy, ethical, and reliable manner in everything we do and say.
- Responsiveness – We provide accurate and timely information about ichthyosis to meet the medical, social and educational needs of our community.
“ALS Care & Support Group, India”
Satvinder Kaur
Satvinder 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
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.
“PAEDIATRIC LIVER DISEASE”
- To promote research into paediatric liver disease
- To spread awareness about paediatric liver disease amongst medical professionals and the public through lectures, educational material, website, conferences, workshops (national and international) and other media and activities. This includes post diagnostic measures as well as supporting & creating awareness of preventive measures as may be possible , including vaccination etc….
- To support children with liver disease and their families in all aspects including facilitating surgeries, making available medicines and investigative facilities , consultation with doctors, providing financial and logistics support and counselling to the families of such patients.
- To support & promote liver transplantation as one of the treatments of liver disease, this includes creating awareness for donation of lever.
- To support setting up of investigation and treatment facilities for children with liver disease
- To collaborate with other organizations/trusts nationally and internationally that are working in related fields and support such organisations/trusts working in India financially and through expertise on all activities related to items a to e above.
“CHRONIC PAIN INDIA”
We are a registered Charitable Trust founded in the year 2017, by Dr. Anubha Mahajan. We work in the direction of providing knowledge and raising awareness in India regarding various chronic pain conditions and chronic illnesses which are usually invisible to the naked eye. Working together with medical professionals from different fields, we strive towards providing aid to every chronic pain sufferer in India along with a platform where they express and inspire others with their respective journeys!
Chronic Pain India works on the principles of a medico-social model and therefore, is committed to build a strong community for every chronic pain-warrior in India by raising awareness about various chronic pain conditions and chronic illnesses.
This bilateral approach of our organization helps us to build a supportive environment and a more accessible alternative for the transformation of communities, health systems and global health policies which is very integral to the cause of chronic pain and for chronic illness warriors.
We at ‘Chronic Pain India’, are involved in initiatives that advance the voices of pain warriors on known and celebrated social media platforms. Through our Virtual Support Group activities and other workshops we feed the emotional and mental needs of the warriors. While our far-sighted and empathetic team infuses sensitivity in the medical professionals that help the overall treatment process.
Chronic Pain India actively seeks donations which are further utilized in the awareness programs and other workshops for chronic pain and chronic illnesses across the country.
Our sole aim is to enlighten India about Chronic Illness and lay bare the reality which has been misunderstood for years now. Chronic Pain India wants to be a harbinger of change in this segment, paving the way for better lives and lifestyles for all pain warriors.
“Fragile X Syndrome”
Shalini
Shalini founded the Fragile X society of India in 2003 with a goal to provide support to families affected with Fragile X Syndrome. Fragile X is one of the leading causes of inherited intellectual disability and Autism worldwide. She saw that the families affected are growing in number a lot faster than the awareness on the condition and took up awareness as the next goal.
The organization has supported around 3500 families affected by the condition.
She is the co-author of the guidelines for Fragile X issued by the IAP.
She is a TedX speaker and has spoken at various conferences on the subject.
“OSTEOGENESIS IMPERFECTA (OI)”
Archana Ravindra
The Founder President of IOIF. Being a person with OI did not stop Archana from establishing and successfully running a Montessori preschool for over 16 years in Bangalore. After dedicating much of her adult life to molding children to be creative, confident, and compassionate individuals she decided to close the school in 2015. She realized that having OI did not stop her from leading an independent, fulfilling life and if she could do it, many more can do it too. With this context, she set out to establish IOIF. To empower individuals with OI to lead a life of positive contribution to the community. To empower them to fulfill their dreams is her dream!
Indian Osteogenesis Imperfecta Foundation (IOIF) is a registered public charitable foundation established to support people with a rare genetic disorder called OSTEOGENESIS IMPERFECTA (OI). It’s a condition in which the bones get fragile due to lack of collagen.
While there has been a lack of understanding and support for many people affected by rare diseases, our foundation has taken the mammoth responsibility of educating the society about OI. We intend to bring more empathy and better independent lifestyle for individuals affected by OI.
Vision – Every person with OI in India leading a fulfilling life.
Mission – To understand the needs of people with OI and create a supportive environment to help them lead a life of their choice.
“HEMOPHILIA”
Karnataka Hemophilia Society (KHS) is a brainchild of a Person with Hemophilia, Dr Suresh Hanagavadi. His life experiences made him strong to initiate a thought of forming this public organization to help and support other people with Hemophilia (PwH).
- Reaching out People with Hemophilia (PwH) and other Related Inherited Bleeding Disorders.
- Providing Diagnosis, Treatment and Rehabilitation services.
- Training of Medical & Para Medical Professionals.
- Public / Media Awareness.
- Resource Mobilization to Sustain Welfare Activities.
- Advocacy with Government for its Involvement and Support.
- Networking with Like-minded organizations (like Disability, HIV/ AIDS, Blood safety…)
- Research and Development.
“MUSCULAR DYSTROPHY (MD)&SPINAL MUSCULAR ATROPHY(SMA)”
Mobility in Dystrophy (MIND) Trust was formed in 2017, by us patients suffering from Muscular Dystrophy (MD) & Spinal Muscular Atrophy (SMA).
In 2016, we started off as a small Whatsapp group of patients reaching out to each other. Through networking and awareness events, we found that a lot of people are under the clutches of these incurable diseases.
Over a short period of time, we enrolled more than 500 fellow patients, who are either residing or originating from Kerala. Interacting with each other, we realised that some of us were much more fortunate that the rest.
Many of our members have no access to informed medical care, education, or financial independence. They come from families struggling to make ends meet.
MIND’s main purpose is to extend all possible help to the least fortunate members. Due to language barriers, and financial limitations, we are currently focused in the Kerala region. We hope to expand further at a later stage.
As a registered trust, we also aim to create awareness among the people and the government about MD & SMA. We have conducted periodical awareness camps in Thrivananthapuram, Ernakulam, and Trichur. We have provided financial assistance, and wheel-chairs to those who are financially not sound.
We have also connected our fellow members to doctors who are aware of, and specialise in these rare diseases. MIND Trust conducts training programs to help our members overcome their financial dependence through education and skill development.
Our yoga and exercise trainings have helped many of us to slow down the progression of this disease. We also advise our members regarding the latest developments in the medical field, and therapies available to MD & SMA patients.
We hope our collective efforts can illuminate and alleviate the sufferings of our less fortunate members.
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.
First described in the 1880s by French neurologist Désiré-Magloire Bourneville, tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. However, many people with TSC are living independent, healthy lives and enjoying challenging professions such as doctors, lawyers, educators and researchers. The incidence and severity of the various aspects of TSC can vary widely between individuals—even between identical twins.
TAMAHAR
Mrs Vaishali Pai
Registered non-profit organization 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.
Individual Rare Disease Advocate
RD Advocate: Alagille Syndrome
RD Advocate: MRKH (and related disorders)
Ms. Snehal Choudhari
Shreya Saraiya, a Rare Disease Advocate for ORDI is a highly motivated youngster striving to bring about a positive change in the lives of individuals with Rare Diseases. She has pursued a Master’s degree in Genetic Counselling with the primary purpose of spreading awareness and educating our society regarding such rare genetic disorders and their implications on human lives. In addition to the Master’s course she has also undertaken and completed several other e-courses related to the field of human genetics and healthcare.
RD 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
