9th World Congress on Rare Diseases and Orphan Drugs June 17-18, 2019 | Berlin, Germany

Venue : Golden Tulip Berlin - Hotel Hamburg

Translational Medicine, Clinical Pharmacology and Clinical Development, Project Management and Team Leader experience for more than 10 years in the area of Rare Diseases. Academic background of more than 15 years, especially in the field of Rare Diseases, Human and Veterinary Pharmacology and Molecular Pharmacology.

Research in molecular pharmacology, intracellular membrane protein transport, signal transduction, pharmacodynamics and pharmacokinetics.

Christian Girard is the founder of Christian Girard E.I.R.L., d/b/a Orphan Drugs Industry Advisory & Intelligence with more than 20 years of domestic and cross-border industry and management consulting experience. He has extensive experience in operations, business development, funding and industry/patients organizations interactions in the rare diseases space. He is a frequent speaker at orphan drugs conferences and has published numerous articles on these topics. Based in France, Christian is a graduate from ESCP Europe, a leading business school.

Orphan Drugs

Jeanne is a well-versed patient advocate with a pioneering sense of the web’s potential to improve health care. Through her broad-based experience as a math and computer science teacher and healthcare website developer, she created the first and largest global social media cystic fibrosis patient community in 1996. Jeanne understands the complex issues patients with cystic fibrosis face. She is an expert in creating effective patient-centered website forums, videos, newsletters, and new technologies for patient education and self-care management. She is skilled in preparing and delivering comprehensive presentations to varied audiences including Pharma Conferences. She has recently chaired and/or delivered presentations at Digital Pharma East, Panagora Pharma, the World Orphan Drug Summit and eye for pharma. Jeanne won the Patient Centricity Award in 2011 from Pharma Phorum. She has a teacher’s patience and curiosity and quickly identifies and addresses the needs of patients requiring innovative technological solutions. In the patient insights space, she is detail-oriented with proven effectiveness in stimulating the patient base and is proactive in promoting the implementation of remote technology solutions, reducing cross contamination health risks and ultimately reducing chronic care costs. She is a graduate of Fordham University. Jeanne is a founding member of the Aurora Project. In her spare time, Jeanne (a birder) explores the neighborhoods, parks, and museums of NYC and its surrounding towns with her husband and grandchildren.

Blockchain for patient Identity, Rare Diseases

Jeanne is a well-versed patient advocate with a pioneering sense of the web’s potential to improve health care. Through her broad-based experience as a math and computer science teacher and healthcare website developer, she created the first and largest global social media cystic fibrosis patient community in 1996. Jeanne understands the complex issues patients with cystic fibrosis face. She is an expert in creating effective patient-centered website forums, videos, newsletters, and new technologies for patient education and self-care management. She is skilled in preparing and delivering comprehensive presentations to varied audiences including Pharma Conferences. She has recently chaired and/or delivered presentations at Digital Pharma East, Panagora Pharma, the World Orphan Drug Summit and eye for pharma. Jeanne won the Patient Centricity Award in 2011 from Pharma Phorum. She has a teacher’s patience and curiosity and quickly identifies and addresses the needs of patients requiring innovative technological solutions. In the patient insights space, she is detail-oriented with proven effectiveness in stimulating the patient base and is proactive in promoting the implementation of remote technology solutions, reducing cross contamination health risks and ultimately reducing chronic care costs. She is a graduate of Fordham University. Jeanne is a founding member of the Aurora Project. In her spare time, Jeanne (a birder) explores the neighborhoods, parks, and museums of NYC and its surrounding towns with her husband and grandchildren.

Blockchain for patient Identity, Rare Diseases

Terence Hoey, CEO/Founder of The Ultra Rare Disease Disorders And Disabilities Foundation we are a charity our cause is huge we want research into rare and ultra rare diseases we also want drug companies to cut the cost of drugs for rare and ultra rare diseases.

Rare and Ultra Rare Diseases

Vesna Aleksovska has a background in journalism, non-government sector, project management and business consulting and around 10 years of experience in patient organizations and advocating for patients’ rights. She founded the Association of citizens for rare diseases “LIFE WITH CHALLENGES” – Bitola in 2009. She is a Gaucher patient and patient advocate for rare disease patient in R. Macedonia. Aleksovska is also co – founder and former President of the National Alliance for Rare Diseases of R. Macedonia from 2014. She is now in the board of NARDM and also in the board of the Alliance of Patient Organizations of Macedonia. In 2013 she become a member of the DITA (Drug Information, Transparency and Access) Task Force EURORDIS (European Organization for Rare Diseases) and a Vice chair and director in the board of directors of the International Gaucher Alliance since 2014. She is also a EUPATI (European Patients Academy on Therapeutic Innovation) fellow, trainer and EUPATI Ambassador for Macedonia. Vesna works in the field of advocacy and lobbying for rights of the rare disease patients in R. Macedonia through cooperation and communication with organizations and institutions (government and non-government) on national and international level. She believes that through strengthening patients and raising public awareness about rare diseases the world can become a better place to live in for patients and families that face life filled with challenges.

Wide knowledge in different fields as: business consulting, non-formal education, journalism, public relations, citizen organization management and action, capacity building of citizen organizations, fundraising, project cycle management, business consulting, culture, economy and health system issues (rare diseases). Well organized, experienced in project coordination, highly developed communication skills, good management and leadership skills, adaptation skills, with desire to learn and develop personally and professionally.

Bert Verhage initially worked as a hospital physician. He headed the foundation known as Transmuraal Netwerk from 2005 to 2009, which promotes the integration of healthcare services in Holland, before switching to the pharmaceutical industry.

Internal medicine, gastroenterology, osteoporosis, endocrinology, orphan drugs, food for special medical purpose, over the counter drugs, self medication, pharmaceutical company, tenders, named patient, pharmacovigilance, regulatory, medical devices, ISO, GDP, GMP, ICH, HACCP, GCP, trading, logistics and Brexit / pharma.