jueves, 1 de diciembre de 2011

Live from Tbilisi, Georgia « Rare Disease Blogs.

November 2nd, 2011

Live from Tbilisi, Georgia

Live from Tbilisi. I am at the 2nd South Caucasia Conference on Rare Diseases and Orphan Drugs. This conference organised by our our Georgian member (Georgian Foundation for Genetic and Rare Diseases – GeRaD) together with the Alliance for Rare Diseases of the SOCO Foundation under the aupisces of EURORDIS thanks to the support of twelve scientific or medical or religious charitable organisations and the sponsoring of fifteen companies is gathering over 250 participants and is a big success.
The First Lady of Georgia Mrs Sandra Elisabeth Roelofs opened the conference in a very engaging manner: “All together we can make a difference for the ones who suffer from rare diseases” “The diseases are called rare because each disease affects few patients but all together rare disease patients represent a lot of people” “Rare diseases are not just about health and medical issues, they are also about the education and social issues and human rights issues looking around the corner at people living with rare diseases” “”Georgia is a modern reforming country. A country of opportunities. You expect the impossible in Georgia. The Health care system is being reformed as in many countries and as elsewhere it is never easy as healthcare is always an issue in most countries. Georgia is a country with problems. 50% of our population is poor. And every person deserves the right to have access to quality care even poor people with rare diseases. We still have a job to do”.
Mrs Roelofs is the First Lady of Georgia since 2004 when her husband Mikheil Saakashvili assumed the presidency. Mrs Roelofs is 43 yrs old and has two sons. She is Dutch and speaks French, English, German, Russian, and Georgian.  She graduated from the Institute of Foreign Languages in Brussels and the International Institute of Human Rights in Strasbourg. She met Mikheil Saakashvili in 1993 while attending a course on human rights in Strasbourg and later that year moved to New York where she worked at Columbia University and a Dutch law firm. In 1996 the couple came to Georgia, where Mrs Roelofs worked for the International Committee of the Red Cross and the Consulate of the Kingdom of the Netherlands in Tbilisi. In 1998 Roelofs founded the charity foundation SOCO which has the primary focus of implementing the programs funded by Western European and Georgian companies and individuals and is aimed at supporting low income families. Since setting new targets in 2007, SOCO has been actively taking care of reproductive health and child welfare in Georgia. In 2007 Mrs. Roelofs founded Radio Muza, the first Georgian radio dedicated solely to classical music.
Mrs Roelofs further explain how she became involved in rare diseases ” My involvement in health started with palliative care, thereafter HIV/AIDS, reproductive health, children and maternal health” “I became a WHO Goodwill Ambassador specially focusing on the Millenium Development Goals in the area of child and maternal health” “In SOCO we have established an alliance for rare diseases. We have established an office providing information to patients on diseases, diagnosis and care as well as lobbying the government, industry and stakeholders to take action for rare diseases” “Few years ago there was not much going on rare diseases in Georgia except few isolated patient organisations and healthcare professionals” “I am happy to use my title and name to improve the situation of people living with rare diseases in Georgia”.
Mrs Roelofs concluded with thee words “With a combination of creativity and enthusiasm we can get unexpected results” “I will see many of you on 29th February in Brussels for the Gala Dinner organised by EURORDIS on Rare Disease Day, an important event to raise funds and to promote the cause of people living with rare diseases. I can help get other influential people to come and speak at the conference”. “For rare diseases we are not talking about Europe only but globally”.
Live from Tbilisi, Georgia « Rare Disease Blogs.

No hay comentarios:

Publicar un comentario