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Rare Humans of India

Stories beyond the prescriptions

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THE VISION

A rare disease is a medical condition with a very low prevalence, The term ‘rare’ itself, as part of the moniker ‘rare diseases’, inherently creates a sense of alienation. These conditions fall under the broader category of Orphan diseases – diseases so uncommon that there is little to no funding and government support for them. 

Having a rare disease is very much like being an Orphan. Lost and set apart from the normal systems of society, with little support from institutions and governments.

Rare Humans of India is an attempt to overcome this otherness. A platform to voice previously unheard stories, a connection to patients in similar situations, and a way to make every single one with an Orphan disease feel cared for. 

What is left out of the official reports, the prescriptions and diagnostic tests, these form the stories to tell.

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About RHoI

Rare Humans of India (RHoI) is centered on improving quality of life for patients with Rare genetic diseases. Our DNA Diaries features focuses on capturing and sharing the narratives of patients at Apollo Indraprastha, New Delhi, regarding their experiences with rare genetic disorders. This involves conducting interviews to gather insights into their challenges, advice, and stories, creating

a platform for them to voice their concerns. RHoI aims to educate a wide audience and dispel misconceptions about these conditions while fostering empathy and support networks among patients with similar experiences, by allowing patients to connect with others through our site. Utilizing these stories to educate primary physicians on the need for genetic referrals and counseling is also a locus point. We have been featured in numerous medical journals and workshops, expanding the reach of our work!

 

Additionally, we host a platform- the RHOI Slack- that may be used to share information and advice, from other patients, doctors, and therapists, to better help patients deal with the social wellbeing challenges presented by such disorders. and receive help from interdiscplinary care teams We also provide clinically verified post-diagnosis management and social care resources on this platform, in regional languages from across India, to improve awareness, reduce stigma, and facilitate better healthcare outcomes through proper after diagnosis management.

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About Apollo Genomics

The Apollo Genomics Institutes, a leading healthcare network in the sphere of Genetics, renowned for its innovative medical services and research, is partnering with us on Rare Humans of India. This collaboration will harness Apollo's extensive expertise and resources to provide clinically verified information, share patient stories, and create robust support networks. By combining Apollo's advanced medical knowledge with our commitment to patient advocacy, we aim to enhance the quality of life for rare disease patients through reliable resources, emotional support, and shared experiences.

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DNA Diaries

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Ambition in the face of Angioedema

Hereditary Angieodema

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Communication beyond Words

Rett Syndrome

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Ammonia Rising

Propionic Acidemia

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A Silent Struggle

Congenital Hearing Loss

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Deeper than the Twin Factor

Developmental and epileptic encephalopathy-1

(mimicker of Cerebral Palsy)

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2 siblings, a single condition

Recurrence of Rare Diseases

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‘Don't be scared of finding cancer. Be scared of not finding it.’

Hereditary Cancer

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Chota Pataka, Bada Dhamaka!

Seckel Syndrome

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Through DNA and Distance

Cardiospondylocarpofacial syndrome

GET INVOLVED

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Genetics and Genomics of Cerebral Palsy- New Clinical Dimensions

27 Sept 2024, 3:00 pm | Online

Join Rare Humans of India as we present 2 DNA Diary stories on genetic conditions which mimic Cerebral Palsy, and spread awareness amongst neurologists on the ever growing need for genetic referrals and counseling.

Genetics Workshop for Pediatricians: Integrating Genetics into everyday clinical practice

In association with Apollo Indraprastha, New Delhi & The Indian Academy of Pediatrics

19 Sept 2024, 1:00 pm | Auditorium, Apollo Indraprastha Hospital

Join Rare Humans of India as we present a DNA Diary story on Rett Syndrome, and spread awareness amongst paediatricians on the ever growing need for genetic referrals and counseling.

Role of Genetics in Breast Cancer

In association with Study on Female Breast Committee and Genetics and Fetal Medicine Committee of Federation of Obstetric and Gynaecological Society of India

10 Oct 2024, 3:00 pm | Online

Join Rare Humans of India as we present a DNA Diary story on Hereditary Cancer, and spread awareness amongst obstetricians, gynaecologists and oncologists on the ever growing need for genetic referrals and counseling.

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