Dedicated to Overcoming Barriers
At RGI, we are more than just an organization. We are a community dedicated to helping rare disease patients find hope for a cure. We work alongside patients and their families, providing them with the necessary tools, knowledge, and connections so that they can better understand the cause of their disease. We believe that every patient deserves more out of life.
A Culture of Caring
Rare diseases can affect any family at any time. It is not just some terrible disease that affects someone out there. It is a very cruel reality that can affect anyone, anywhere. Rare diseases have no boundaries, whether social, economic, or geographical. We at RGI understand the pain that rare disease patients and their families go through. And we care deeply about helping our patients. It's in our DNA.
Focused on the Individual
While rare disease patients face similar challenges, each rare disease is unique in its own way. That's why we focus on the individual. Our funding model and results are centered on the patient. Donors are not giving to a mere cause, but to an actual individual. Patients receive information about their unique genetic sequence so that they can identify the specific treatment that is right for them. We start from the individual.
RGI is committed to outstanding stewardship of donor funds and will not take for granted the trust of our patient families, who trust us act in their best interests. We aim for accountability and transparency in everything we do, whether it's in every dollar we raise and spend or in walking with our patients through the entire process from beginning to end.
Our mission is to help patients secure funding and obtain a genetic sequence of their disease. Our network of clinicians then help patients intrepret the results and make clinical decisions accordingly. Each patient funds for an end-product project that is well-defined, has a high chance of success, and will directly impact the patient. We guarantee a tangible result.
- Rare diseases are often chronic, progressive, degenerative, and life-threatening
- Rare diseases are disabling: the quality of life of patients is often compromised by loss of autonomy
- Patients and their families experience a high level of pain and suffering
- There is no existing effective cure for many of these patients
- There are between 6000 and 8000 rare diseases
- 75% of rare diseases affect children
- 30% of rare disease patients die before the age of 5
- 80% of rare diseases have identifiable genetic origins
* Yaneva-Deliverska M. RARE DISEASES AND GENETIC DISCRIMINATION. J of IMAB 2011; 17(1):116-119.