Thanks to Rare Disease Ghana Initiative, my son's condition has been diagnosed. We couldn't have afforded a genetic testing but RGDI stepped in and funded it. Though currently there's no cure for Creatine Transporter Deficiency, my family is positive about the ongoing research to finding cure. We're greatful to Rare Disease Ghana Initiative for their wonderful work.
This is a nonprofit that gives its absolute best to the community it serves, from coordinating hospital visits to getting clinicians to educate persons living with rare diseases one-on-one (as well as the general public) and collaborating with industry partners to provide diagnostic services at a reduced cost.
Rare Disease Ghana Initiative also supports its staff through capacity building efforts aimed at improving people and processes to make operations run more smoothly.
Overall, this is a charity that deserves all the attention and support it needs so they can continue to be pillars for Ghana’s rare disease community.
As much as possible, this organization keep seeking treatment options for it's community and to enhance the well-being of it's people
Live with a rare disease in Ghana? Reach out to this organization and they'll be sure to help
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Once had a beautiful 3-year old referred to me as a cerebral palsy case but upon assessment, I ruled out CP as a possible diagnosis. Can’t begin to describe how frustrating it was for me as a Physiotherapist and the child’s family. Reached out to RDGI and got a genetic test done for the child and both parents for FREE! The entire process was professional and smooth and thanks to that we were finally able to find the actual Diagnosis (Spinal Muscular Atrophy type3). Although it wasn’t such great news it still gave us answers making therapy goals more realistic and achievable. They went ahead to provide counseling sessions for the parents and the child , topping it up by providing the child with a very specially designed wheelchair. I could write a whole book about all the fantastic things and great impact they’ve made and continue to make in the lives of many families! Kudos RDGI!
Rare Disease Ghana Initiative have done a lot for the rare disease community here in Ghana. Through their efforts over 200 patients have gotten diagnosis others have received treatment.
I got the opportunity to learn about rare diseases for the first time by working with RDGI. God bless RDGI for helping to support persons living with rare diseases in Ghana.
Hi my name is Yaa Adubea and my family has benefited massively from RDGI. It is through RDGI that got to know our son Eden has a rare genetic disease called PIGA CDG. When Korle bu Teaching Hospital told the cost involved to run the test we were dumbfounded but RDGI came through and sorted every bill. Thank you very much RDGI and God bless all the team players especially Mr Samuel Wiafe for everything your are doing for us.
Rare Disease Ghana Initiative has done great in advocating for persons living with rare diseases in Ghana. Through their Diagnostic program, they have been able to help diagnose over 100 rare disease patients which is a big step in the care pathways for these patients. Good Job Rare Disease Ghana!
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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.
I had an amazing time volunteering with the Rare Disease Ghana Initiative. A wonderful team of staff and volunteers as well as an overall professional outlook! I loved it.
Most Innovative and dynamic Initiative. Rare Disease Ghana Initiative is one of a kind, it serves, preserves, and seeks innovative ways to help and protect the lives of rare disease patients in Ghana. It is a pleasure and devotion I serve this great Non-profit.
Rare Disease Ghana Initiative’s commitment to improve the quality of life of patients and families with rare and undiagnosed diseases in Ghana is hard not to see. Through its programs and projects, the organization has consistently been impacting the rare diseases community within and outside of Ghana. And it’s been a privilege to have been part of the organization’s story.
RDGI is a very supportive organization who helps us to know about some rare disease and how to prevent them. Not only prevent but to identify such diseases
This organisation has helped me to understand the enigma of the rare disease especially in children and has broadened my logical understanding on treatments and how to interact with some of these rare diseases.
RDGI is doing really well in terms of being a voice for people living with rare diseases in Ghana. As a health worker, I have personally engaged with them with regards to a patient of mine and we're currently in the process of helping diagnose my patient who had been living with a rare disease for as long as she has been alive. Really grateful for this organisation!
RDGI is a great organization providing support to persons living with rare diseases in Ghana and increasing awareness on the various conditions among both the general public and medical practitioners.
It also provides fantastic opportunities for learning and personal development for staff/volunteers as well.
I have learned a lot and improved my capacity as a volunteer for this organization while helping to improve the quality of life of persons living with rare conditions in Ghana.
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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!
The organization has made great strides in helping to improve the lives of persons living with rare Diseases in Ghana. We are proud to have an organization such as this.
Rare Disease Ghana Initiative has been very active this year especially there recognizing rate webinar series has helped me learn a lot about rare diseases.
Rare Disease Ghana Initiative is touching lives and helping persons with suspected Rare, Genetic and Undiagnosed diseases find their locus.
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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.
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.
The organization is doing a great job as it is able to indentify clients with rare diseases and with the help of medical practioners are able to source for funds to run tests to diagnose the condition.
Psychological counseling is conducted to both the guardians and the client to give them hope to move on with their lives despite having a rare disease.
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.
I have worked together with them for several years on many project and hope to in the future. I am founder of www.rarefundingteam.com
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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!
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.
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!
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
#carefortherare
#RareDiseaseGhInitiative
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.