Rare Helix Foundation, RHF is dynamic online platform connecting persons living with a Rare Disease, their families, volunteers, doctors, therapists, research institutes, funding agencies, pharma, and biotech firms.
RHF strengthens the relation between the research institutes, drug developers, hospitals, and rare diseases family groups for bringing access to minimum therapies for rare diseases through early diagnosis and facilitating financial support in development of new drugs.
VISION: Create an ecosystem by connecting the dots of hope for the wellbeing of humans suffering with rare diseases.
MISSION: Mainstreaming rare diseases therapies in health sector
I. RAISE funds for bringing frontier research benefiting people with rare diseases through, networking, technology transfer and exchange
II. RESPECTABLE living standards created to the people living with rare diseases
III. REPRESENT Persons Living with Rare Disease along with their families on various forums.
Diagnosing and accessing therapies for rare diseases and finding a cure for it is a living challenge around the world and it would be in future also. Covid pandemic has made us think out of the box by which we could be able to fast track research and develop vaccines for saving lives. The world has united for getting a vaccine and was successful in halting the pandemic. Advanced Clinical trials of vaccines were parallelly conducted in the countries with wider cohorts and emergency approval of vaccines based on satisfying data.
The world has witnessed an inspiring lesson learnt from the pandemic and the same has inspired us with an idea of establishing the Rare Helix Foundation, which is a dynamic tool collecting data on individuals living with a Rare Disease, connecting them doctors, therapists, research institutes, pharma, and biotech firms with the support of volunteer and families.
Rare Helix Foundation would like to create an ecosystem by facilitating data on rare diseases and create avenues for fundraising to pharma and biotech companies interested in conducting a clinical trial of drugs in India which is already in an advanced stage of clinical trials developed in other countries.
RHF has a group of experts working behind the screen for guiding all the activities undertaken by RHF.
I request all the families, doctors, research institutes, pharma, and biotech companies to support the initiative so that not even a single person living with a rare disease is left behind.
