EURORDIS TV | www.eurordis.org

EURORDIS TV | www.eurordis.org

EURORDIS TV

Recopilando los vídeos del colectivo de enfermedades raras en EURORDIS TV Tuxes for Tia - una película que narra los retos diarios de la vida con Fenilcetonuria (PKU) y porqué tener una "dieta de por vida" es fundamental. Producido en asociación con la Alianza Nacional de PKU (EEUU) NEWS & CURRENT ISSUES CHANNEL + Alpha-1 Awareness Month 09.11.2014 5:44 Scientists Track Link Between Ebola and Rare Genetic Disease 03.11.2014 3:18 Susan Etlinger: What do we do with all this big data? 20.10.2014 12:27 Webinar: European Year for Rare Diseases 24.10.2014 56:40 Join the campaign to make 2019 the European Year for Rare Diseases. 25.09.2014 3:31 show more videos LIVING WITH A RARE DISEASE CHANNEL + 8-Year-Old Raises More Than Half a Million Dollars to Help Cure His Friend 27.02.2014 2:07 Tuxes for Tia 04.10.2013 5:47 Dravet syndrome families unite 29.10.2014 2:47 PSPA - Keith's Story 30.10.2013 8:31 Cushing's Symptoms & Diagnosis - Melissa's story 28.10.2014 4:32 show more videos PATIENT GROUPS CHANNEL + Move the ones who can't! 05.11.2014 4:32 CDH (Congenital Diaphragmatic Hernia) Awareness Film by CDH UK 19.02.2013 14:32 DEBRA Ireland, Highlights of 2013 16.01.2014 2:14 Erdheim Chester Disease Global Alliance 09.11.2013 17:43 NORD: 30 Years of Advocacy for the Rare Disease Community 21.05.2013 6:30 show more videos EURORDIS EVENTS CHANNEL + EURORDIS Policy Event 2014 (1/8) - Welcome and Introduction 04.03.2014 9:41 EURORDIS Policy Event 2014 (2/8) Topic 1: Vision of Patients 04.03.2014 10:27 EURORDIS Policy Event 2014 (3/8) - Topic 1: Panel discussion 04.03.2014 33:22 EURORDIS Policy Event 2014 (4/8) Topic 2: Vision of patients 04.03.2014 8:29 EURORDIS Policy Event 2014 (5/8) Topic 2: Panel discussion 04.03.2014 41:29 show more videos EXPLAINING RARE DISEASES CHANNEL + Think Again. Think NP-C campaign showreel 02.09.2014 3:34 Susan Norwell Introduces Rett University 12.11.2013 6:37 RareConnect Castleman disease community webinar 18.04.2014 44:42 Amyloidosis Awareness (narrated by Michael York) 24.02.2009 10:30 What are vascular problems associated with Marfan syndrome? 19.09.2013 2:32 show more videos RESEARCH CHANNEL + Bridging patients and researchers to advance research in rare diseases. 16.02.2010 6:37 Opening Speech by Robert Madelin to European Workshop on Rare Disease Researc... 18.03.2010 5:57 Research: Cells from Niemann Pick C1 patients used to combat Ebola virus 24.08.2011 3:47 Telethon's Scientific Committee: the focus on patient need 30.07.2013 4:22 2014 Metabolic Origins of Disease Symposium - Scientific Highlights 10.04.2014 7:33 show more videos RARE DISEASE DAY CHANNEL + Webinar: How to use the Rare Disease Day 2015 Website 27.11.2014 29:59 Rare Disease Day 2015 Webinar: the Spirit and History of Rare Disease Day 03.10.2014 51:51 Rare Disease Day 2014 message from Yann Le Cam 18.02.2014 4:24 Rare Disease Day 2014 Official Video 12.02.2014 1:51 Raise and join hands for Rare Disease Day from UK patient organisations! 05.12.2013 0:51 show more videos ORPHAN DRUGS & TREATMENTS CHANNEL + European orphan designation 03.04.2014 15:49 FDA orphan designation 03.04.2014 31:26 Episode 17 - Future Outlook on the Orphan Drug Market 02.01.2014 6:58 Eric Gervais of Medunik Canada on Canadian orphan drug market at World Orphan... 14.05.2013 12:14 What does the black triangle mean? 01.10.2013 2:44 show more videos HEALTH POLICY CHANNEL + Europe's eHealth Action Plan: An Interview with Benoit Abeloos 29.09.2014 10:44 European recommendations for the treatment of haemophilia and other bleeding ... 14.07.2014 3:48 Philip Watt, Chair of the Rare Disease Taskforce Ireland 04.04.2014 10:15 Alastair Kent O.B.E Building the Rare Disease Strategy: Joining Together for ... 02.04.2014 27:05 Newborn Screening Saves Babies.....One Foot At A Time (ENGLISH) 11.01.2012 16:33 show more videos NON-ENGLISH VIDEOS CHANNEL + 1er Congrès francophone de l'hyperglycinémie sans cétose 15.09.2014 5:03 Get moving against Rare Diseases. Campaign by TMB Barcelona 07.10.2014 0:59 ADN - Génome - Génétique : prévenir et guérir de maladies rares 24.10.2014 5:31 ¿Cómo explicar la Piel de Mariposa? 23.10.2014 4:02 2014 03 Oct CSMA Chernivci 04.10.2014 6:17 show more videos