Events http://www.rarediseases.org daily 1 2011-05-10T03:21:46Z EDNF Learning Conference http://www.rarediseases.org/news-events/events/ednf-2013 The EDNF will hold its 2013 Learning Conference August 1-3, 2013 in Providence, RI. The EDNF will hold its 2013 Learning Conference August 1-3, 2013 in Providence, RI.

]]> No publisher Tai Spargo 2012-12-27T16:02:20Z Event TNA 9th National Conference http://www.rarediseases.org/news-events/events/tna-2013 The TNA will hold its 9th National Conference “Empowering Patients Through Education” on Oct 4-6, 2013 in San Diego, CA The TNA will hold its 9th National Conference “Empowering Patients Through Education” on Oct 4-6, 2013 in San Diego, CA

]]> No publisher Tai Spargo 2012-12-27T16:04:16Z Event Systemic Sclerosis is a Treatable Multi-System Disease? http://www.rarediseases.org/news-events/events/sclerosis-2013 On May 22, the tenth webinar in a series designed to help patients in the scleroderma community. The tenth webinar in a series designed to help patients and others in the scleroderma community understand the disease, what’s being done to find a cure and what new treatments are on the horizon. Dr. Monique Hinchcliff, Director of Translational Research at the Northwestern Scleroderma Program, will discuss systemic sclerosis as a multi-system disease.

Register here: https://cc.readytalk.com/cc/s/registrations/new?cid=hdy891afasqh

]]> No publisher Tai Spargo 2013-05-16T21:06:07Z Event Skin Manifestations in Scleroderma http://www.rarediseases.org/news-events/events/11-sclerosis-2013 On July 12, Dr. Lorinda Chung will focus on how scleroderma affects the body, and most specifically, skin manifestations in scleroderma patients. Dr. Lorinda Chung will focus on how scleroderma affects the body, and most specifically, skin manifestations in scleroderma patients. She will provide insights on the impact on this aspect of the disease and how patients can better manage; looking at signs, symptoms, treatments and other management tools.

Register here: https://cc.readytalk.com/cc/s/registrations/new?cid=osqrqv90hutc

]]> No publisher Tai Spargo 2013-05-16T21:10:00Z Event What's New in the World of Scleroderma http://www.rarediseases.org/news-events/events/12-sclerosis-2013 Sept. 17th will be the next webinar in a series designed to help patients in the scleroderma community. The next webinar in a series designed to help patients and others in the scleroderma community understand the disease, what’s being done to find a cure and what new treatments are on the horizon. Dr. Laura Hummers, Assistant Professor of Medicine and Co-Director of the Johns Hopkins Scleroderma Center, will discuss what is new in the world of scleroderma.

Register here: https://cc.readytalk.com/cc/s/registrations/new?cid=fhqneur1lc2e

]]> No publisher Tai Spargo 2013-05-16T21:10:00Z Event International Behcet's Awareness Day- May 20, 2013 http://www.rarediseases.org/news-events/events/behcets-2013 May is International Behcet's Month and May 20th is International Behcet's Day! May is International Behcet's Month and May 20th is International Behcet's Day

Everyone can participate and raise awareness!

Get involved in the "Awareness Challenge" now through June 15.

Visit http://www.behcets.com/internationalbdday for a chance to win.

Please print and complete the entry form and mail to:

Behcet's Awareness

PO BOX 80576

Rochester, MI 48308

or email us at webmaster@behcets.com



Winners will be drawn at random. All entries must be postmarked by June 15, 2013

]]> No publisher Tai Spargo 2013-05-02T17:14:20Z Event Turner Syndrome Society of the U.S. Annual Conference http://www.rarediseases.org/news-events/events/turner-2013 The Turner Syndrome Society of the US would like to invite you to the 26th Annual TSSUS Conference on July 12-14, 2013. We’re heading to Texas!

The Turner Syndrome Society of the US would like to invite you to the 26th Annual TSSUS Conference. We’ll be at the Westin Galleria in Dallas, Texas, July 12-14, 2013.

What better place to celebrate our “Boot Scootin’ Fun” than in the Lone Star State?

Updates about the conference, or to view the conference brochure, visit www.tssusconference.org.

See you in Dallas!

]]> No publisher Tai Spargo 2013-05-02T20:12:02Z Event 35th Annual Association for Glycogen Storage Disease Patient/Family/Professional Conference http://www.rarediseases.org/news-events/events/35th-annual-association-for-glycogen-storage-disease-patient-family-professional-conference The Annual Association for Glycogen Storage Disease Patient/Family/Professional Conference will be held on September 20-21, 2013 The 35th Annual Association for Glycogen Storage Disease Patient/Family/Professional Conference will be held on September 20-21, 2013 at the Embassy Suites Raleigh-Durham/Research Triangle in Cary, North Carolina, USA.

]]> No publisher Tai Spargo 2012-12-10T16:35:06Z Event 2nd ATP1A3 Symposium in Disease http://www.rarediseases.org/news-events/events/atp1a3-2013 The aim of the Symposium on Sept. 23-24 is to present the further progress of the research on Alternating Hemiplegia of Childhood. Genotype/Phenotype Correlations, modelling and identification of potential targets for treatment

The aim of the Symposium is to present the further progress of the research on Alternating Hemiplegia of Childhood (AHC), after the finding of the ATP1A3 gene as the primary cause of this rare neurological disease, to promote the international collaboration and recruit new teams of researchers.

Speakers and Chairs

Alexis Arzimanoglou
Associated Professor of Neurology and Child Neurology, University Children’s Hospital of Lyon, France

Allison Brashear
Professor & Chair, Department of Neurology Wake Forest Baptist Medical Center, Winston-Salem, NC, United States

Alexander Chibalin
Associate Professor of Cell Physiology, Dept. of Molecular Medicine and SurgeryKarolinska Institute, Stockholm, Sweden

Sharon Ciccodicola
Medical Liaison, AHCF Foundation for Alternating Hemiplegia of Childhood, Southfield, MI, United States

Steven Clapcote
Lecturer in Pharmacology, University of Leeds, United Kingdom

Giuseppe Gobbi
Director Child Neurology Unit, Maggiore Hospital, Bologna, Italy

David B. Goldstein
Professor & Director Center for Human Genome Variation, Duke UniversityDurham, NC United States

Tiziana Granata
Division of Child Neurology, IRCCS Scientific Institute C. Besta, Milano, Italy

Fiorella Gurrieri
Professor of Medical Genetics at the Institute of Medical Genetics,Università Cattolica del Sacro Cuore, Rome, Italy

Erin Heinzen
Assistant Research Professor Center for Human Genome Variation, Duke UniversityDurham, NC United States

Jan Koenderink
Associate Professor Nijmegen Centre for Molecular Life SciencesNijmegen, The Netherlands

Karin Lykke-Hartmann
Associate Professor Department of Biomedicine Aarhus University, Denmark

Arn van den Maagdenberg
Professor of Genetics, Leiden University Medical CentreThe Netherlands

Paolo Manunta
Professor and Chair of the School of Nephrology, San Raffaele UniversityMilan, Italy

Mohamad Mikati
Professor of Paediatrics & Neurobiology, Duke UniversityDurham, United States

Giovanni Neri
Professor of Medical Genetics & Director of the Institute of Medical Genetics,Università Cattolica del Sacro Cuore, Rome, Italy

Poul Nissen
Professor Department of Molecular Biology and Genetics, Aarhus UniversityDenmark

Eleni Panagiotakaki
Hôpital Femme Mere Enfant, Hospices Civils de LyonFrance

Steve Petrou
Associate Professor Department of Center of Neuroscience University of Melbourne, Australia

Dominique Poncelin
President of the French Association for Alternating Hemiplegia of Childhood AFHA France

Hanne Poulsen
Department of Molecular Biology and Genetics, Aarhus University, Denmark

Hendrik Rosewich
Department of Paediatrics and Adolescent Medicine, Georg August University Göttingen, Germany

Masayuki Sasaki
Department of Child Neurology, National Center of Neurology and Psychiatry,Tokyo, Japan

Tsveta Schyns-Liharska
Consultant Research Management, Founder and Board Member of ENRAH, Brussels, Belgium

Kathleen Sweadner
Associate Neurobiologist, Associate Professor of Cellular & Molecular Physiology Department of Neurosurgery, Massachusetts General Hospital, Harvard Medical School, Boston, MA, United States

Kathryn Swoboda
Associate Professor, Neurology and Pediatrics and Director Pediatric Motor Disorders Research Program, University of Utah School of Medicine, United States

Rosaria Vavassori
I.B.AHC Project Coordinator and President of the Italian Association for Alternating Hemiplegia of Childhood A.I.S.EA, Italy

Edvige Veneselli
Director Child Neuropsychiatry Unit, Department of Neuroscience, IRCCS Scientific Institute G. Gaslini, Genova, Italy

Federico Vigevano
Director Neurology Division, IRCCS Scientific Institute Bambino Gesù Children’s Hospital, Rome, Italy

Jeff Wuchich
Co-Founder & President, Cure AHC-Alternating Hemiplegia of Childhood, Rolesville, NC, United States

]]> No publisher Tai Spargo 2013-05-08T15:20:00Z Event The Alpha-1 Association’s 22nd annual National Education Conference http://www.rarediseases.org/news-events/events/alpha-1-2013 The Association’s 22nd annual National Education Conference will be held in Washington, DC on June 7-9. The Association’s 22nd annual National Education Conference will be held in Washington, DC on June 7-9.

]]> No publisher Tai Spargo 2013-05-08T19:43:40Z Event 2013 ASF Biennial Conference http://www.rarediseases.org/news-events/events/asf-2013 The 2013 ASF Biennial Conference will be held July 23-26 in Orlando, FL. The 2013 ASF Biennial Conference will be held July 23-26 in Orlando, FL.

]]> No publisher Tai Spargo 2013-05-08T19:45:00Z Event Rare Kidney Stone Patient Meeting & Walk http://www.rarediseases.org/news-events/events/rare-kidney-2013 The OHF in collaboration with the Rare Kidney Stone Consortium & Mayo Clinic Hyperoxaluria Center will present the Rare Kidney Stone Patient Meeting & Walk in Rochester, MN on June 7-8. The OHF in collaboration with the Rare Kidney Stone Consortium & Mayo Clinic Hyperoxaluria Center will present the Rare Kidney Stone Patient Meeting & Walk in Rochester, MN on June 7-8.

]]> No publisher Tai Spargo 2013-05-08T19:46:12Z Event Immune Deficiency Foundation (IDF) National Conference http://www.rarediseases.org/news-events/events/idnf-2013 The IDF will hold its 2013 National Conference June 27-29 in Baltimore, MD. The IDF National Conference is the only meeting in the U.S. that brings together the primary immunodeficiency community for three days of learning, discussing and sharing. Our conferences have become a tradition, and we expect this seventh national conference to continue to attract people from all over the country. It is an incredible opportunity for individuals and family members living with primary immunodeficiency diseases to gain knowledge about their diseases from world-renowned immunologists. Attendees will learn about advancements in the diagnosis and treatments and gain skills needed to manage their healthcare. Patients and families will have the opportunity to meet other families and talk with our generous sponsors in the interactive exhibit hall. We want you to be a part of it!

]]> No publisher Tai Spargo 2013-03-05T16:15:55Z Event UMDF Symposium http://www.rarediseases.org/news-events/events/umdf-2013 The United Mitochondrial Disease Foundation will host a symposium on June 12-15 in Newport Beach, CA. The United Mitochondrial Disease Foundation brings together clinical and basic science researchers sharing an interest in mitochondria from all over the world. Participants come from many fields, including biochemistry, genetics, neurosciences, cardiology, cancer, diabetes, nephrology, hematology, pediatrics and aging research.

During the symposium, patients and families meet others who, like themselves, are seeking knowledge. They may be parents or an individual with similar experiences or someone that lives close to them. Patient and family attendees are given many opportunities to meet some of the top mitochondrial specialists from around the world.

The symposium encourages the exchange of information and cultivates networking among physicians, researchers, patients and families. UMDF offers a four-day scientific/clinical program and a two-day patient/family program.

]]> No publisher Tai Spargo 2013-03-05T20:24:38Z Event The Cardio-Facio-Cutaneous International Family Conference http://www.rarediseases.org/news-events/events/cfc-2013 The Cardio-Facio-Cutaneous International Family Conference will be held July 31-August 3 in Orlando, FL The Cardio-Facio-Cutaneous International Family Conference will be held July 31-August 3 in Orlando, FL.  This meeting will bring together affected families from CFC International, Noonan Syndrome Support Group, and Costello Family Network.

]]> No publisher Tai Spargo 2013-02-04T16:32:00Z Event