We are pleased to invite you to join us in Clearwater Beach, Florida at the beachside Sheraton Sand Key Resort, for a conference for families living with myotonic dystrophy, the most common form of adult onset muscular dystrophy. With the goal of creating the largest ever patient/research forum, we will...
Events
Addressing the Needs of Ultra Orphan Patient Populations by Creating and Measuring Value Strategies for Delivering Outcomes and Value for Patients, Physicians, Payers, and Manufacturers September 19 – 21, 2011 St. Louis, MO The international orphan drug marketplace is expected to grow some 30 percent by 2014, fueled by...
On behalf of the committee, We would like to invite you to join us for the Awakening Australia to Rare Diseases Symposium to be held in Fremantle, Western Australia from 17-20 April 2011. The symposium aims to: • Combine international, national and local expertise and experiences; • Present a range...
The goals of this conference are to provide a forum for leading experts to discuss the molecular and cellular basis of lymphangioleiomyomatosis (LAM), to review the clinical management of LAM, to present cutting edge research, to integrate concepts, and to identify creative and innovative research directions. For information please contact...
Dr Nick Sireau (AKU Society) Wednesday Lunch 13.00 – 14.15 Rare diseases affect 6-8% of the world population, yet are severely under-researched, undertreated and under-resourced. That’s why they’re called orphan diseases: orphaned from society. There are 7,000 rare diseases. Only 200 have treatments, most of which are only accessible in...
You asked for networking and more opportunity to meet other attendees. So we’ve jammed in as much networking time as physically possible, from the speed networking sessions right through to the evening dinner. To make sure you meet the people you need to meet. And you also get to buy...
Orphan Drugs Summit 2011: The market earned revenues for orphan drugs is estimated to reach USD 27.09 billion in 2015*. It is no surprise that this niche market is now attracting an even higher interest from not only small and medium enterprises, but from large pharmaceutical companies looking at adding...
World Orphan Drug Congress USA is a forum bringing together leading pharma and biotech executives to strategize about the opportunities and challenges in commercializing treatments for rare and ultra-rare diseases Congress Venue: Hilton Embassy Row Washington, D.C. World Orphan Drug Congress USA is an executive level, interactive conference experience. The...
‘This symposium is meant for all generalist & specialist doctors, laboratory scientists, genetic counsellers, pharmaceutical & clinical laboraotries to know of the recent trends in the field of Clinical Genetics and Genomic Medicine, thus enhancing their knowledge, medical & professional practice and health service delivery. The symposium will be beneficial...
The ACMG meeting is THE educational and networking event for medical and clinical geneticists, genetic counselors, pediatric and obstetric practitioners who are providing comprehensive diagnostic, management and counseling services for patients with, or at risk for, genetically influenced health problems; laboratory directors and technicians conducting genetic testing; researchers involved in...
Genomic technologies provide unheralded precision in identifying the causative genetic mutations in human disease, and uncover new mechanisms of mutagenesis. Genetic disorders represent a significant contribution to the burden of disease in many countries including those in the Middle East. Deciphering the molecular etiology of these genetic disorders is a...
The Second ASID Meeting is now scheduled from 8th to 11th March, 2012 in Hammamet, Tunisia For information and registration please visit the Meeting Website
The New York State Department of Health is pleased to announce Genetic Diseases of Children: Advancing Research & Care. This national conference will bring together the worlds of health, science, government, and industry with the families who look to them for answers. For information and registration please visit the Conference...
The goals of this conference are to guide the future direction of studies focusing on pathogenic mechanisms of Hermansky-Pudlak Syndrome (HPS) pulmonary fibrosis and to identify potential therapeutic strategies for the treatment of pulmonary fibrosis of HPS. Contact for additional information: Bernadette R. Gochuico (301) 451-7979
At the conclusion of this conference, attendees will be expected to: (1) identify key factors increasing disease penetrance in females, (2) identify key factors increasing disease penetrance in carriers of the BMPR2+/- mutation, (3) identify risk factors that can be targeted pharmacologically as novel therapeutic strategies, and (4) assess the...
This conference is designed to stimulate the development of collaborative research projects between amyotrophic lateral sclerosis (ALS) physicians and basic scientists. It is expected that conference participants will develop a consensus regarding current research gaps and recommended next steps to enhance patient-oriented research in ALS. The previous “Tarrytown 1” conference,...
The health care recommendations and research agenda will be reported to NIH and disseminated to families and professionals via mailings, Web sites, and publication in peer-reviewed journals. Future conferences will focus on translating the rapid basic science advances into clinically useful, disease-specific treatments. In addition to directly improving the lives...
The goals of this conference are to: (1) improve/broaden the knowledge and understanding of causes and cures of LCMN/NCM among those in attendance; (2) disseminate knowledge collected at the meeting to concerned people via a robust Internet presentation and conventional print forums; (3) accelerate the search for causes and cures...
This workshop is an opportunity to exchange ideas and develop collaborations with a multidisciplinary group of researchers and clinical specialists from across the globe. As in years past, this workshop will stimulate cross-disciplinary thinking spanning a breadth of topics from developmental biology to drug development and advances in surgical approaches....
Keynote Speakers: Marianne Leone – actor, screenwriter, essayist and author of Knowing Jesse – A Mother’s Story of Grief, Grace, and Everyday Bliss Dr. Mitchell D. Chester – Commissioner, Massachusetts Department of Elementary and Secondary Education The Federation for Children with Special Needs, along with co-sponsors the Early Intervention Parent...