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!
Rare Disease Ghana Initiative is a wonderful organization committed to not only helping rare disease patients and their families who are struggling with rare diseases, but it's also committed to identifying systems and partnerships to improve the healthcare system and reduce the many obstacles to healthcare access that these patients face.
I like how the organization is focus on representing one of most vulnerable group in our society. Striving to provide good healthcare and help families get the diagnosis (answers) they need.
Rare Disease Ghana Initiative has been instrumental in making the lives of people in Ghana who live with genetic and rare disorders better. It has provided solutions to these people who otherwise would have no hope of a better life. The working environment in the organization is very warm and welcoming. I’m glad to be a part of this life changing experience.
My encounter with Rare Disease Ghana Initiative (RDGI) has been to provide a well planned and strategised sensitisation and awareness to the general public about New Born Screening through Social Media Campaign which was climaxed with a Webinar. RDGI is making some great strides in the area of Rare and Undiagnosed Genetic Diseases which I believe will go a long way to revolutionise the needed attention and collaboration for caregivers and people/persons living with Rare and Undiagnosed Genetic Disorders/Diseases.
RDGI is one of the best nonprofit organizations in Ghana that has so far helped most patients living with rare disease have a better chance of survival and social integration. RDGI in it’s mission of helping patients living with rare disease get better and quick diagnoses, has come up with various partnerships to help this regard and this I recommend them for their efforts in the rare disease community in Ghana.
A world-class non-profit organisation with compassion for its patients and care-givers.
Rare Disease Ghana Initiative is an amazing organization with authentic, ethical and smart leadership. Their team does wonderful things for the rare disease community within Ghana and beyond! Proud to know such a nonprofit exists and I'm happy to be of service. Looking forward to seeing them continue in their mission to help better the lives of patients and families affected by a rare disease.
Rare Disease Ghana Initiative has given me the opportunity to learn more about patients living with rare diseases and undiagnosed disorders. It has been an amazing experience advocating for the awareness of rare diseases and undiagnosed disorders in Ghana and Africa at large. Thumbs up RDGI.
Rare Disease Ghana Initiative primary role is to ensure that patients with Rare Diseases are recognized for the needed support. Great NGO, that requires the necessary push.
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.