Find Help and Fight Rare Diseases by Fundraising
By: Astha & Chiara
Published On: February 28, 2021
The last day of February is observed as Rare Disease Day across the world. This 28th February, we will shed light on improving access to treatment options for individuals with rare diseases. Creating awareness about rare diseases and their course of medical treatment is equally important.
About 7000 rare diseases and disorders are reported in India according to the most recent statistics. Although such diseases affect a small percentage of the population, they can be debilitating and life-threatening without proper medical attention.
Over 70 million people in India are affected by rare diseases. Due to the large population and low literacy rates in the country, most people in rural India have limited access to hospitals for even initial diagnosis. Several adults and children get diagnosed in the latter stage of their rare disease. Even after their diagnosis, the costs of drug treatments are mostly sky-rocketing! On average, advanced drug therapies often cost up to Rs 52 lakh a year.
Fundraising helps beat rare diseases!
When an exorbitant amount stands between your loved one and their cure, who do you turn to? Fundraising is the quickest solution for a medical cause. In an emergency, you can bank on the donors as you present the seriousness of your cause.
Little boy Hilal on his mother’s lap
In 2020, hundreds of donors came forward to save 7-year-old Muhammod Hilal from a rare disease called hydrocephalus which causes the head to swell due to the build-up of fluid in the brain. The little boy couldn’t speak, sit or eat as his painfully expanding head weighed him down. Strangers saw Hilal’s fundraiser on ImpactGuru crowdfunding platform and contributed to the child’s surgery and ICU support worth lakhs.
Another such astonishing yet heart-warming story is that of Baby Teera. Mumbai couple Mihir and Priyanka’s baby girl was diagnosed with a rare disease called Spinal Muscular Atrophy (SMA) Type 1. With the disease attacking her muscles, the baby couldn’t sit up or move to even feed. Her only cure, a curative drug called Zolgensma was worth Rs 16 Cr!
The parents saw a miracle happening before them when over 87,000 donors stepped up to Teera’s rescue and helped raise Rs 15 Cr to save her life.
Gather donor-support to fight rare diseases!
Several Indian families are left helpless in the face of rare diseases with no means to afford expensive drugs and treatment for their loved ones.
But the parents of these babies suffering from Spinal Muscular Atrophy refused to give up hope and started a fundraiser to help their children get the world's costliest cure - Zolgensma.
As a doctor himself, Siyona’s father noticed that she couldn’t lift her arms. At only 4 months old, the baby girl was diagnosed with SMA Type 1. Upon starting her fundraiser on ImpactGuru, 200+ donors contributed to getting her closer to her cure.
Ayaansh Madan is a 2.5 year old boy who has been battling SMA Type 1 with a smile. Through the fundraiser created by his parents, the baby boy is inching towards getting Zolgensma with the support of 1363 donors.
1-year-old Janish awaits a similar miracle as Teera as he grapples with SMA. With nothing left to their name after his diagnosis and initial treatment, Janish’s parents started a fundraising campaign to save their child. So far, 1762 donors have come forward to rescue their innocent baby boy.
The first-child to his parents, Yuvaan was diagnosed with the rare disease only a few months after he was born. His mother, Rupali Ramtekkar started a fundraiser on ImpactGuru to reach out to the masses to save her son. 600+ donors responded to the little boy with ample love and donations from across the country.
Through fundraising, donors from across the world are helping these little bravehearts take baby-steps to attain their cure worth Rs 16 Cr!
This Rare Disease Day, start your own fundraiser at ImpactGuru and reach out to hundreds of donors to make your story heard and save your loved one's life.