I have worked with Rare Ghana Initiative (RDGI) and found the team very professional and dedicated to helping people in a difficult medical, economic and regulatory environment. In all jurisdictions around the people with rare diseases are challenged, RDGI is fighting for patients in a area without these services. AMAZING WORK!
As a parent having a child with rare diseases, i see rare diseases Ghana as a mouth piece for all children living with these conditions and together we will find solutions to better the lives of these children and their families. Way to go.
Rare Disease Ghana Initiative has a good team and gives everyone the opportunity and platform to equip themselves with knowledge and to build themselves. I am privileged to be a volunteer in this great initiative.
Rare Disease Ghana Initiative is a Non-governmental organisation fighting for people and patients with rare diseases in Ghana. It has been an incredible year and very exciting activities and fun moments spent working with all members in the rare disease initiative. I am so excited with the turns and direction the organisation is heading to, I have immense hope and satisfaction in the coming years, we can only expect the best, and I am reassured that the initiative will cover the rest of the country (Ghana), and even take it beyond (Africa). Let's care for the rare!
Awesome organisation. They truly have the well being of the patients at heart.
Rare Disease Ghana is made up of a team of young people with an infectious passion for making a difference in the lives of the ‘forgotten’ in the health sector. The volunteers work cohesively to shine a light on those affected by ‘rare diseases’, their stories, struggles and what they really need to better their circumstances. It’s wonderful work being done in a challenging climate. But things are being done and that’s what’s important!
Rare Diseases Ghana Initiative always has the interest of their patients and seek to find new ways to make the lives of those living with Rare diseases in Ghana better
I have been working with Rare Disease Ghana Initiative for sometime now and I must say it's a team of young professionals who're giving off their best to make society a better place for those living with Rare Disease in Ghana. We're just praying and hoping to get more volunteers and partners who'll come on board to support what we do. We're getting there
I came across the Rare Disease Ghana initiative when I was talking to a colleague about the current state of genetics education in Ghana while conducting research into the public perception of genetics and genomic studies in the Country. I was really amazed and excited at the aims and objectives of the group that my colleague and I did not think twice to register as volunteers immediately! In Ghana, very little information exists about genetic diseases and especially rare diseases. For a very long time, people and families with these types of conditions have been outcasted and treated with disdain by their community members because many believe that they are of spiritual origin and maybe punishment or curses from spiritual beings. What the RDGI seeks to do is very important and commendable as it will not only remove the negative perceptions of having an undiagnosed disease through their several educational seminars and public engagement activities but will also help create the proper awareness whiles collaborating with research institutions and funding organizations to help in diagnosing and conducting more biomedical research in this field.
I joined Rare Disease Ghana Initiative right after University. The organization is still small, in a lot of ways besides physical, but the impact is something I can proudly say I wouldn't get easily anywhere else.
A small organization being able to train doctors, help raise funds for families stricken with rare diseases and congenital ones and involve itself with international bodies on rare diseases that are farther along in growth and still make impact is one that deserves all the help it can get to grow much more and do bigger things.
Financial help is key in any organization and more so in not-for-profit ones like Rare Disease Ghana Initiative.