dr. Fabrizio Salvi, Head of the Centre for Rare Diseases and Neuroimmunitarie, (il Be.Ne.) Bellaria Hospital, Bologna, He’s the first neurologist to support Zamboni in clinical trials on MS patients, as well as the leading expert in the neurological ccsvi’s assessment Sassari, Sardinia c/o Hotel “Il Vialetto” – Room “Piazza dItalia” april 24 2010 Translation edited by Angela Cleary Speakers: Prof. Paolo Zamboni (University of Ferrara) CCSVI in Multiple Sclerosis Roberto Galeotti (University of Ferrara) Liberation Treatment Fabrizio Salvi (Bellaria Hospital, Bologna) Neurological aspects after the Liberation treatment Moderator: Gian Tomaso Marchio (President of the non profit Sa.SM)

CheckOrphan NewsFlash for Wednesday, November 4, 2009 – breaking news about rare diseases, orphan diseases, orphan drugs, and neglected diseases. Today’s broadcast highlights topics about: Mount Sinai School of Medicine, diabetes, heart disease, kidney disease, idiopathic pulmonary fibrosis, IPF, lung disease, progressive supranuclear palsy, PSP, ImmuneWorks, Zeltia, PATH Malaria Vaccine Initiative, malaria, Gamma Knife, glioblastoma multiforme, HIV, AIDS, neglected tropical diseases, worms, protozoa, bacteria, fungi, viruses, Health Affairs, Project HOPE www.checkorphan.org http www.healthaffairs.org

CheckOrphan NewsFlash for Thursday, April 1, 2010: breaking news about rare diseases, orphan diseases, orphan drugs, and neglected diseases. Today’s broadcast highlights topics about: GlaxoSmithKline, Isis Pharmaceuticals, strategic alliance, antisense therapies, rare diseases, messenger RNA, tuberculosis, Mycobacterium tuberculosis, Dr Kristine Arnvig, Mtb, neglected disease, UT Southwestern Medical Center, blood pressure medication, Mtb bacterium, reserpine, Drug Discovery Unit, University of Dundee, University of York, Structural Genomics Consortium, parasitic disease, African trypanosomiasis, sleeping sickness, Food and Drug Administration, Clinuvel Pharmaceuticals, clinical trial, afamelanotide, erythropoietic protoporphyria, EPP, metabolic disorder www.checkorphan.org http

(In русский) (in Russian) Mitina was a participant in the European Conference on Rare Diseases (ECRD) Krakow 2010. Mitina is a member of the Hunter Syndrome Association in Russia

Channel 19, KYTX – 10/28/09 – Newborn screenings can help detect rare diseases in newborns.

Public service announcement issued by Gov. Rick Perry urging all Texans to join him in working to eradicate Batten and other rare diseases that are devastating families and taking innocent lives.

This video’s purpose is to raise awareness of Eosinophilic Gastrointestinal Disorders, EGID, EOS, Eosinophilic Esophagitis, all rare diseases that affect both children and adults and for which there is no known cure or sure treatment

EURORDIS (European Rare Diseases Organisation) organised a Dinner Debate on March 3rd 2009 at the European Parliament in Brussels hosted by MEP Prof Trakatellis, Parliament Rapporteur for the Council Recommendation on the ocassion of Rare Disease Day

Sabine Vollmer of Science in the Triangle sits down with Dr. Maria Escolar, the May 2010 TARDC Luncheon series speaker at the RTP Headquarters. Escolar speaks on how she got started and where the impetus for her research into rare diseases originated.

There are currently more than 6000 diseases classified as “rare,” and little is know about them. In Italy, for example, there is a frequency of one case in 20000 to 200000 people. On Rare Disease Day, the Giuseppe Dossetti association held a congress in Rome called “Rare Diseases and Disabilities.” Physicians, scientists, politicians, pharmacists and members of various associations attended the congress with the aim of raising awareness about these type of diseases. Scientists began to study them in the 1980s. Marina Del Bue Assobiotec 80 percent of rare diseases have a genetic basis, therefore, we believe that the contribution of biotechnology is extremely important. In fact, today thanks to some biotechnological techniques we been able to gain benefits on some of the main diseases. These diseases present many diagnostic and research difficulties. Thats why there is a lack of effective treatments. One of these is the Friedreich’s Ataxia. An extremely rare neurodegenerative disease that poses serious heart problems and still no medicine has been found to cure it. Cardinal Javier Lozano Barragán, president of the Pontifical Council for the Pastoral Care of Health Care Workers, presented the “Lectio Magistralis” on the right to health. Cardinal Javier Lozano Barragán President of the Pontifical Council for the Pastoral Care of Health Care Workers “The goal should always be to preserve the non-negotiable dignity of human life, of the human person, because people are who they …