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2019 Top-Rated Nonprofit

Rare Disease Ghana Initiative

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health

Mission: To improve the wellbeing and quality of life of families affected by genetic and rare diseases in Ghana.

Results: Rare Disease Ghana Initiative has embarked on several impactful activities. The organization has spearhead the hosting of the Rare Disease Day event in Ghana. The first Rare Disease Day which was held in February 2018 was done in collaboration with the Infant school of Ghana International School. This event was featured in the Rare Daily’s (news portal for global genes) and the spring edition of Rare Revolution Magazine. For the second Rare Disease Day which was held in 2019, Rare Disease Ghana Initiative teamed up with Multikids Africa to do a face painting campaign with the students of Multikids Academy. In addition, a section of the students at Multikids joined RDGI team to share fliers and leaflets on rare diseases to shoppers at the A&C Mall. In May 2018, RDGI also joined the global community with ME/CFS through a collaboration with ME/CFS SA to host the 'MillionMissing' event for the first time in Ghana. The team from RDGI did a solidarity video which was shared through Social media to show our support to the millions of people missing due to ME/CFS and other invisible illnesses. In addition, RDGI also lighted up the building of Impact Hub Accra in purple to support to people living with Autoimmune Diseases and Invisible illnesses. RDGI has embarked on several online campaigns and has joined the world through social media to honor the Undiagnosed Day, Dazzle4Rare and Rare Fair 2018. It was also a media partner to RAREfest2018. On behalf of RDGI, the Executive Director was invited to give a presentation on rare diseases and the Rare Disease Ghana Initiative to the Accra Chapter of the Pediatric Society of Ghana during the March 2018 monthly meeting. This helped to increase awareness, knowledge and increase professional interest on rare diseases among the pediatricians. Through Rare DIsease Ghana Initiative, a total of seven doctors have benefitted from a training on metabolic disorders being organised FYMCA Medical Training in Africa. Rare Disease Ghana Initiative in collaboration with the West African Genetic Medicine Center with support from SickleGenAfrica hosted a symposium on Genomics and Rare Diseases at Korle-Bu Teaching Hospital in February 2019. The Organisation is currently planning to embark on a regional tour to sensitize the medical community about rare diseases. RDGI assisted to enroll 2 cases from Ghana in the “Beyond The Diagnosis Art Exhibit”. The focus of the Beyond Diagnosis Art Exhibit is to increase research and raise awareness of rare diseases within the medical community through art. Professional artists from the world donate their time and talent to paint portraits of children living with a rare disease. The portrait then becomes part of a travelling exhibit for medical schools, research institutes and hospitals. Rare Disease Ghana Initiative has supported the surgeries of 4 children with rare diseases.

Target demographics: Families affected by Undiagnosed, genetic and rare diseases

Direct beneficiaries per year: 20+ families, and trained 7 health professions, hosted Rare Disease Day and Organised a symposium on Genomics and rare diseases

Geographic areas served: Ghana

Programs: Awareness and Educational, Advocacy, Research, Care Coordination, Community engagement, and patient support.

Community Stories

10 Stories from Volunteers, Donors & Supporters

7 Sean G.1

Volunteer

Rating: 5

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!

1

Board Member

Rating: 5

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.

2 Ramasaysthankulord A.

Volunteer

Rating: 5

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.

6

Volunteer

Rating: 5

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!

7 Daniel D.3

Volunteer

Rating: 5

Awesome organisation. They truly have the well being of the patients at heart.

5 Damilola Olu-Jacob O.

Volunteer

Rating: 5

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!

7

Volunteer

Rating: 5

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

8

Volunteer

Rating: 4

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

8 Priscilla Abena A.

Professional with expertise in this field

Rating: 5

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.

8

Volunteer

Rating: 4

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.