Crowdfunding For Rare Diseases: Raising Awareness and Funding For Specialized Treatments
Written by:
Arthi T
A rare disease occurs infrequently in a population, but there is no universal definition. The three elements to the definition as used in various countries are as follows:
The total number of people having the disease
Its prevalence
Non-availability of treatment for the disorder
The World Health Organization (W.H.O.) has suggested that a rare disease should be defined as one with frequency less than 6.5 – 10 per 10,000 people. India, like many developing countries, currently has no standard definition. Considering the large population of India, it is generally defined as rare if it affects 1 in 5,000 people or less. Rare diseases (RDs) affect a significant portion of the global population, with more than 7,000 rare diseases reported worldwide. In India alone, approximately 70 million people are affected by these conditions, which translates to 1 in 20 Indians. The RARE GENES project maintains a comprehensive directory of all known rare diseases.
Key facts about rare diseases in India
Prevalence
Around 70 million people in India are affected by rare diseases.
Genetic origin
About 80% of rare diseases are genetic, with many being monogenic (caused by mutations in a single gene).
Onset
50% of rare diseases manifest at birth, while the rest have a late onset.
Types of RDs
These include inherited cancers, autoimmune disorders, congenital malformations, infectious diseases, and others like hemangiomas, Hirschsprung disease, Gaucher disease, cystic fibrosis, muscular dystrophies, and lysosomal storage disorders (LSDs).
Need help covering the treatment costs for rare diseases?
Challenges in rare disease management
Early diagnosis
Diagnosing rare diseases early is a major challenge, often taking an average of 5-7 years.
Treatment availability
The majority of rare diseases have no available treatment. When treatments do exist, they are often unaffordable.
Affordability
While treatment options are limited and costly, charitable access programs, such as those by Genzyme and Shire, provide support for LSD patients in India. Crowdfunding platforms like Milaap also play an important role in raising funds for rare diseases.
You can check the list of Rare diseases covered under the National Policy for Rare Diseases (NORD) here.
Government digital portal for crowdfunding & voluntary donations for patients of rare diseases
The 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.
Financial aid provided to poor patients living below poverty line for treatment at any super specialty government hospitals / institute - Rashtriya Arogya Nidhi (RAN)
The umbrella scheme of Rashtriya Arogya Nidhi (RAN) is a central sector scheme which provides one-time financial assistance to poor patients living below State/UT wise threshold poverty line and suffering from life threatening diseases relating to heart, kidney, liver, cancer, etc including rare diseases for treatment at any of Super Specialty Government hospitals/institutes.
For specified rare diseases for treatment at Government hospitals/institutes having Super Specialty facilities; maximum financial assistance is Rs. 20 lakhs. More information on the umbrella Scheme of Rashtriya Arogya Nidhi can be accessed here.
Need help covering the treatment costs for rare diseases?
Have you exhausted all sources? What’s next?
Milaap: A transparent and global support platform for rare diseases
Milaap is one of India’s leading crowdfunding platforms, dedicated to raising funds for medical emergencies, including rare diseases. It has garnered a reputation for transparency, reliability, and global support, making it an essential resource for patients and their families facing the financial challenges of rare disease treatment.
Transparency
Milaap places a strong emphasis on transparency to ensure that donors feel confident about where their money is going. Here’s how Milaap maintains transparency:
Verified campaigns
Every campaign undergoes a stringent verification process to ensure authenticity. Medical documents and financial needs are carefully reviewed before the campaign is approved.
Real-time updates
Campaign organizers are encouraged to provide regular updates about the patient’s condition, treatment progress, and how the funds are being utilized. These updates are visible to all donors, fostering a sense of trust and ongoing engagement.
Detailed expenditure reports
Milaap requires campaign organizers to submit detailed reports on the expenditure of the raised funds. This ensures that the donations are used appropriately and as intended.
Secure transactions
The platform ensures that all transactions are secure, protecting both the donor’s and the recipient’s financial information.
International donations
Milaap accepts donations from around the world, allowing people from different countries to contribute to campaigns. This broadens the donor base significantly, increasing the potential for successful fundraising.
Wide outreach
Through its extensive network and user-friendly interface, Milaap enables campaigns to reach a global audience. Social media integration and sharing tools make it simple for campaigners to spread the word far and wide.
Real-life testimonials
Many families have successfully raised the necessary funds for life-saving treatments, thanks to the generosity of donors from around the world. These stories are shared on the platform, inspiring others and demonstrating the effectiveness of crowdfunding.
By leveraging Milaap’s transparent and globally inclusive platform, patients with rare diseases in India can find the financial support they need for critical treatments. This empowers them to focus on their health and recovery without the overwhelming burden of medical expenses.
Success stories on Milaap
In times of need, support means everything, and with Milaap, you need not look any further. Milaap enables you to set up a fundraiser for any medical emergency within minutes, and you can easily raise funds for treatment expenses.
Do you know someone who could benefit from fundraising? Simply refer them to us and we’ll be happy to lend a hand.
Visit www.milaap.org or call us on +91 9916174848 to get started now.
For more information, write to us at cx@milaap.org.
