RARE DISEASES SOCIETY
NEPAL
Rare Diseases Society Nepal is the only umbrella organization dedicated to improving the standard of care for patients diagnosed with rare diseases in Nepal. It aims to support accurate diagnosis, accelerate treatments and provide proper guidance to patients and families.
About us
The Rare Diseases Society Nepal is the umbrella organization for the rare disease patients of Nepal. It is formed with the motto “Leaving no one behind with rare disease in Nepal’. It works for the fundamental rights of the people with rare diseases in Nepal. This organization supports accurate diagnosis, and treatment, and guide patients and their family with rare diseases. It is crucial and we believe every human should live a quality life with equality in society.
Our objectives
We have set the following main objectives for the duration of the policy plan:
- Our organization supports patients and their families with rare diseases and provides professional care on both medical and psychosocial levels. We want a positive impact on the lives of people with rare diseases.
- To unravel the genetic cause of the rare diseases and to enable treatment of the conditions.
- To ensure the medical diagnosis is accurate in a short span of time.
- To bring patients, their families, caregivers, and medical professionals together.
- To collaborate with other organizations emphasizing the concept of ‘together we are stronger.' We wish that it is a ‘win-win’ situation for all parties involved and that our joint collaboration can lead us to our goal. It is important that all organizations demonstrate mutual respect in terms of professionalism, ambitions, and activity.
Our vision
Providing medical and psychosocial support for people with rare diseases and their families; to improve the quality of their lives.
We provide medical and psychological support to patients and their families coming from different ethnic and geographical backgrounds of Nepal with rare diseases.
We encourage patients to be as self-reliant as possible, have direct control over their own lives, and be able to participate in social activities.
To carry out genetic research into the cause of rare diseases and we hope to be able to treat the conditions eventually.
Our mission
Leaving no one behind with rare diseases in Nepal
Promoting well-being of the people suffering from the rare diseases
Developing health guidelines and awareness to support rare diseases.
To promote scientific research with national and international collaborations.
Our values
- We represent the interests of patients and their families with rare diseases.
- We have a team of medical professionals at our disposal, who are experts in their relative field.
- We can give emotional support to the patient and their family based on our own knowledge and experience.
- Impact and Range. We want to have a positive impact on the quality of life of the patients and their families.
- We use modern cutting-edge technology and adopt a modern approach.
- We work together with all kinds of organizations and individuals to achieve our goals.
Message from the President
The Rare Diseases Society of Nepal is a non-profit organization that aims to provide support and assistance to patients with rare diseases in Nepal. Our organization strives to ensure that no rare disease patient is left behind and works towards promoting the well-being of individuals through the development of health guidelines and awareness programs. We also seek to promote scientific research with national and international collaborations to support rare diseases. Our vision is to provide medical and psychosocial support to people with rare diseases including different ethnic and geographical backgrounds of Nepal. We are committed to supporting them in overcoming obstacles and improving their quality of life. Ultimately, we aim to provide hope and support to individuals with rare diseases and their families in Nepal.
Mr. Nirmal Khadka
President,
Rare Diseases Society of Nepal
We are proud to announce that Rare Diseases Society Nepal is a member of the IndoUsrare Patients Alliance.
We are delighted to announce that we have successfully concluded a one-day symposium on rare diseases. We express our heartfelt gratitude to Dr. Rajesh Sambhajirao Pandav sir (WHO Repersentative to Nepal) and the entire WHO team for their unwavering support and assistance in organizing this event. Additionally, We would like to extend our thanks to NMA and Dr. Anil Karki for their collaborative efforts in making this program possible.
A special word of appreciation goes to RDSN board members, as well as all the speakers and attendees who graced the symposium with their presence. Without each and every one of you, this event would not have been possible. Your contribution and participation have truly made a significant difference, and We are sincerely grateful for it. We look forward to arranging such events in the coming future.
