2^nd World Congress on Rare Diseases November 25-26, 2019 Dubai, UAE

Bukkie Ojoawo is a passionate, impactful, reflective clinical research professional with deep interest in developing and monitoring innovative clinical trials that will improve the quality of life for people with acute or chronic illnesses while safety of the patients is ensured. A clinical research maven in the rare disease world, particularly in pediatric neurological conditions, Bukkie has helped in conducting a vast range of drug research in rare disease and some of those drugs are commercially available to treat some rare conditions such as Duchenne Muscular Dystrophy. She is the co-founder of Apex clinical research site management organization which specializes in helping research sites run successful trials without compromising the integrity of the data collected. She has a Master’s degree in Clinical Research from Walden University and Graduate Certificate in global clinical research from Harvard Medical School. She is currently a clinical research professional at Emory University in Georgia, USA.

.

Cesare has more than 20 years of experience in the drug development field, in both scientific and commercial roles. He is co-founder and Chief Operating Officer of Oncoheroes Biosciences Inc., a Boston-based biotech company exclusively focused on paediatric oncology drug development. Prior to that he held senior positions at AMRI, Aptuit Laurus, ThalesNano and Auxiliis BV. Cesare started his career as research scientist in a pharmaceutical company (Eisai London) and in academia (institute of Enzymology, Budapest). Following the death of his first daughter Laura to cancer, Cesare set up aPODD Foundation, a London-based charity focused on accelerating paediatric oncology drug development. As aPODD’s chairman and trustee he is actively involved on a pro-bono basis in drug repurposing projects and research collaborations with other childhood cancer charities. Cesare holds an MSc in Applied Molecular Biology and a PhD in Neurosciences from UCL, University of London, as well as an MBA from the Central European University, Budapest.

.

Fighting like a lion, is something that Debbie never thought would be her life strategy. Fighting a chronic condition is bad enough, but seeing your two children go trough it as well is even harder. She started her own facebook page to tell the story of her family in hope for awareness. What she got was worldwide reactions from mothers going trough the exact same thing. Telling stories and speaking up was never an issue, so Debbie decided to stand up and take an the fight. Telling her own stories and the stories of fellow worriers in the hope for a better future for her children and all the children fighting this condition all over the world. Her answer to the solution is communication, hope and love. Patients and health care providers working together with respect for one and other and making sure that the best care is provided. For so far Debbie spoke to a variety of schools, university and at conferences. Hoping the voices of children and their parents wanting care and validation is being heard. Together we are strong and together we have the future.

.

Fighting like a lion, is something that Debbie never thought would be her life strategy. Fighting a chronic condition is bad enough, but seeing your two children go trough it as well is even harder. She started her own facebook page to tell the story of her family in hope for awareness. What she got was worldwide reactions from mothers going trough the exact same thing. Telling stories and speaking up was never an issue, so Debbie decided to stand up and take an the fight. Telling her own stories and the stories of fellow worriers in the hope for a better future for her children and all the children fighting this condition all over the world. Her answer to the solution is communication, hope and love. Patients and health care providers working together with respect for one and other and making sure that the best care is provided. For so far Debbie spoke to a variety of schools, university and at conferences. Hoping the voices of children and their parents wanting care and validation is being heard. Together we are strong and together we have the future.

.

Lara Bloom is the international Executive Director of the Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Lara manages coordinated medical collaboration, raising funds for research and focus on global progression, education and awareness. Lara speaks at conferences all over the world, lectures to medical students and professionals and supports specialists in the field by offering her experience as a leading patient expert in rare diseas-es. Laras current advocacy work includes: - Rare Disease UK - Patient Empowerment Group member -Rare Diseases International - Advocacy Committee member -NIHR CONCORD: CO-ordiNated Care Of Rare Diseases - Co-Investigator -European Reference Network Groups RECONNECT & VASCERN - Patient Expert -GenTAC Alliance Patients - Families, and Clinicians Working Group member -PARADIGM & EPF - Expert Advisor -Medicines and Healthcare Products Regulatory Agency Patient Group Consultative Forum Member -EUPATI Fellow

.

Experienced manager with a demonstrated history of working in pharmaceutical industry on many different positions on various levels within the Affiliate with regional involvement. Skilled in Negotiation, Presentation, Communication, Publication, Oncology, Hematology, Neuroscience and Rare Diseases. Currently working as Patient Advocacy Lead and Personalized Eco System Partner for Rare Conditions. Regularly being invited as speaker and panellist on several meetings on different topics. Author and co-author of several manuscripts on various topics. Awarded several times by Global and Regional teams for successfully completed tasks and projects. Strong healthcare services professional graduated from Faculty of Medicine, Ss Cyril and Methodius in Skopje, North Macedonia and finishing Master Degree in Marketing.

.