There are about 7000 known Rare Diseases, affecting around 8% of the world’s population. 75% of Rare Disease patients happen to be children.
The last two decades have seen emergence of new therapies for a few Rare Disorders which previously had no hope of survival. By using innovative techniques and advanced scientific technology, researchers have developed novel drugs which are showing miraculous results.
However, even though some of these new therapies are highly promising, they are prohibitively expensive and lifelong in many situations, placing immense strain on the resources of the affected families. What an agony for the parents to see their affected child suffering or dying for lack of access to the treatment, due to the cost! The situation is equally distressing to physicians who are involved in the care of patients with these Rare Disorders.
Together we can fulfill our collective social obligations of securing treatment for these children suffering from Rare Diseases.
The Department of Health and Family Welfare has launched, www.rarediseases.nhp.gov.in, a Digital Portal for Crowdfunding & Voluntary Donations for the treatment of patients with Rare Diseases in accordance with the mandate of the National Policy for Rare Diseases 2021.
Government of India is committed to secure treatment for patients of Rare Diseases in the country. However, in view of the high cost of treatment, resource constraints and competing health priorities, it is difficult for the Government to fully finance these treatments. To fill this gap this digital platform for individual, corporate and other donors has been created by the Government for facilitating voluntary donations for the treatment of patients with Rare Disease. The information relating to the patients, diseases from which they are suffering, estimated cost of treatment and details of bank accounts of the treating Institutions is available on this portal.
Government of India has identified 8 institutions which are actively managing patients suffering from Rare Diseases. These institutes have been designated as Centres of Excellence (CoE).
Group 1: Disorders amenable to one-time curative treatment.
Group 2: Diseases requiring long term / lifelong treatment having relatively lower cost of treatment and benefit has been documented in the literature and annual or more frequent surveillance is required.
Group 3: Diseases for which definitive treatment is available but challenges are to make an optimal patient selection for the benefit, very high cost, and lifelong therapy.
How do I make donation?
You have to register yourself if you are making a donation for the first time. However, having registered once, you may login with your set of credentials.
What happens in the eventuality of death / discontinuation of treatment in the case of patient / patients specific donations?
The balance amount of donation will be used by the institution for the treatment of other patient / patients suffering from Rare Diseases.
Would the health status update be available in case of patient specific donations?
Yes, only periodically when the major milestones are achieved during the course of treatment, the health status update would be available.
What happens in case the patient specific donation is more than the amount required for the treatment of that patient?
The surplus fund shall be utilized towards the treatment of other patients suffering from Rare Diseases.
I have more questions, who do I write to?
What all types of donations can I make?
You are allowed to donate the amount directly to institution/s or you can select and make patient-specific donations. However, all donated funds are deposited in an earmarked Rare Disease fund of the institution concerned. Your patient-specific donations will be used for the treatment of that particular patient out of the Rare Disease fund.
Does the donated amount reach the individual directly in case of patient specific donation?
No, the donated fund shall remain in the Rare Disease fund of the institution concerned. The same shall, however, be utilized for the treatment of the specific patient.
Is my donation secure?
Yes, the portal features the very best in secure payment encryption technology. Not only are your online payments safe, the fund donated is also maintained securely in a dedicated bank account of the institution concerned.
Are there any minimum requirements to make a donation?
No, there isn’t any minimum cap for making donations. However, in case of making a donation through the Net Banking mode a few banks require a minimum threshold of Rs. 50 to process the payment.
Is it possible to make donations through an International Credit Card?
Yes, donations can be made using an International Credit Card.
What all payment modes are available for making donations?
The following options are available to make donations:
Source: Rare Diseases Portal