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Charles Hammond

Emmanuella Amoako

Mawutor Ablo

Director Social Protection at Ministry of Gender, Children and SocialProtection

Kwaku Ohene-Frempong

director emeritus of the Comprehensive Sickle Cell Center at Children’s Hospital of Philadelphia

Roselyn Kanja

Eda Selebatso

Botswana Organisation for Rare Diseases (BORDIS)

Arme Hendriksz

CEO of FYMCA Medical Ltd

Greg Perry

International Federation of Pharmaceutical Manufacturers & Associations

Domenica Taruscio

Undiagnosed DIseases Network International

Rüdiger Kresh

World Health Organization

Kawaldip Sehmi

International Alliance of Patients' Organizations


Fondation Internationale TIerno et MAriam - FITIMA

Aime Lumaka

Human Heredity and Health in Africa (H3Africa) Intiative

Rose Okoma

Aux Pas Du Coeur - Ivory Coast

Gareth Baynam

University of Western Australia

Mary Ampomah

Global Sickle Cell Disease Organization

Lwazi Manzi

Head of Secretariat of the AU Commission on COVID-19

Rana Saifi

WHF - Regional Manager Middle East

Matt Bolz-Johnson

Rare Diseases International (RDI)

Kelly du Plessis

Rare Diseases South Africa

Christine Mutena

Rare Disorder Kenya

Lara Bloom

The Ehlers-Danlos Society

Flaminia Macchia

Rare Diseases International (RDI) Executive Director

Durhane Wong-Rieger

Rare Diseases International (RDI) Chair

Hlawulani Mkhabela

Rare Diseases International (RDI) Strategic Engagement Manager

Nthabeleng Ramoeli

RARE Diseases Lesotho Associations

Mary Wang

Rare Diseases International (RDI) Scientific Policy Manager

Trudy Nyakambangwe

Child & Youth Care - Zimbabwe

Manzi Ndamukunze

Centre Alliance, Rwanda

Ayotunde Omitogun

Rare Diseases Nigeria

Pinky Chirwa

Nelson Mandela Children's Hospital

Samuel Agyei Wiafe

Founder and Executive Director, Rare Disease Ghana Initiative.

Rare Disease Ghana Initiative (RDGI) is the National Non-Governmental Advocacy Organization for Undiagnosed, and Rare Disorders made up of a network of professionals, patients, caregivers and organizations whose aim is to develop, seek wide endorsement and to advocate for the implementation of a plan to support research, education, service development and seek support for individuals and families affected by undiagnosed, genetic and rare diseases in Ghana.


Rare Disease Ghana Initiative

The voice for Undiagnosed, Genetic and Rare Diseases in Ghana

Rare Diseases International

Global Alliance of Persons Living with a Rare Disease and their Families

Rare Disorders Kenya

We provide a united voice for the rare disease community in Kenya

Ghana Hemophilia Society

Breaking the chains of Hemophilia

The Rheumatology Initiative

Education. Advocacy. Research


Spina Bifida and Hydrocephalus Organization in Ghana.