Rare Disorders meetings & conferences

Seventh Annual Huntington Disease Clinical Research Symposium (HDCRS)

Saturday, November 9, 2013 from 8:00am - 12:30pm Charlotte, North Carolina

Sickle Cell Disease Association of America 41st Annual Convention

September 24 – 27, 2013 Linthicum, Maryland

Since 1972, the Sickle Cell Disease Association of America, Inc. has served as America’s only voluntary national organization working full-time to resolve issues surrounding sickle cell disease. SCDAA is comprised of over 59 community based member organizations serving patients and their families in over 300 communities in North America. The 41st Annual Convention will be held on September 24 – 27, 2013 in Linthicum, MD.

3rd Global Congress for Consensus in Pediatrics & Child Health

February 13-16, 2014 Bangkok, Thailand

The concept for the CIP congress and program was developed for Pediatricians working in Primary and Secondary Care, as well as for specialists in the diverse areas of Pediatrics, Pediatric Surgeons, Family Medicine Doctors, General Practitioners, Researchers and Policy Makers

Main Topics

Primary Care

Neonatology

Pediatric Allergy & Immunology

Critical & Intensive Care

Pediatric Dermatology

Emergency Medicine

Pediatric Education

Pediatric Endocrinology

Pediatric Gastroenterology

Social Pediatrics

Pediatric Genetics

Hematology & Oncology

Infectious Diseases and Vaccinology

Pediatric Nephrology

Pediatric Neurology

Developmental-Behavioral Pediatrics

Pulmonology and Sleep Medicine

Pediatric Psychiatry

Pediatric Radiology

Pediatric Rheumatology

Pediatric Nutrition

Pediatric Sports Medicine

Adolescent Health

Surgery and its specialties

Rare and Orphan diseases

Pharmacology and Toxicology

Contact Us

Paragon Conventions
Tel: +41 (0)22 533 0948 Fax: +41 (0)22 580 2953
Email: cip@cipediatrics.org

International GSD Conference

28-30 November 2013 Heidelberg, Germany

For the first time, an international conference will bring together liver and muscle types of glycogen storage disease (GSD). World experts will discuss the state of research and therapies for the muscle and liver types in parallel sessions. The exchange of experiences will be stimulated by plenary sessions, addressing the challenges of rare diseases, developing therapies for rare diseases, and the benefits of building communities.

Patient group representatives will complete the picture by contributing the patients' perspective. Special sessions for the most rare GSD types are an option, as well as workshops for specific topics. Scientists can expect a high-level scientific conference; patients can use it as a forum for first-hand information and community. The conference will contribute to a better understanding of the GSDs, encourage progress in therapies and disease management, and facilitate the formation of networks of both scientists and patients.

The conference program will cover the GSD liver types I/III (von Gierke/Cori disease) and the GSD muscle types II/V (Pompe/McArdle disease) as well as other rare GSD types.
 

Progressive Multifocal Leukoencephalopathy

June 19 - 20, 2013 The New York Academy of Sciences

Presented by the Progressive Multifocal Leukoencephalopathy Consortium and The New York Academy of Sciences

Progressive Multifocal Leukoencephalopathy (PML) is, in the general population, a rare but serious demyelinating disease of the brain, often resulting in severe disability or death and is caused by infection of oligodendrocytes by the JC polyomavirus (JCV). It is believed that fifty to sixty percent of the population is sero-positive for JCV, indicating exposure to the virus. Despite the high prevalence of JCV infection in the human population, which typically leads to a chronic, asymptomatic infection, incidence of PML in the general population is very low. The pathogenesis of PML is not well understood. It is believed that the development of PML, while dependent on the presence of JCV, is the result of a confluence of viral and host risk factors, which may include an altered or compromised immune system such as in individuals with HIV-1 infection/acquired immune deficiency syndrome (AIDS), or patients undergoing chronic immunosuppressive therapies after organ transplantation, for treatment of lymphomas, or for autoimmune conditions, such as MS.

This 2-day conference will bring together basic science researchers, clinicians, physicians, epidemiologists, and regulatory experts from academia, industry, and government to address novel issues, current challenges, and future directions of basic and clinical research relevant to the mitigation, potential future cure, and risk stratification of PML. Topics of discussion will include JCV virology, PML pathogenesis, risk stratification and disease diagnosis and management. The meeting will feature a series of plenary lectures, short talk presentations selected from submitted abstracts, a poster session, and a closing panel discussion.

20th International Scientific Meeting of the Velo-Cardio-Facial Syndrome Educational Foundation

July 18-21, 2013 Dublin Ireland

Join VCFSEF as we travel to Dublin Ireland for the 20th International Scientific Meeting. This meeting will bring international speakers to Dublin to share updated research and information about VCFS/22q11.2 deletion syndrome.

Questions

info@vcfsef.org
1.855.800.8237

7th International Congress on Shwachman-Diamond Syndrome

November 4-6, 2013 Toronto, Canada

We invite clinicians, scientists and others with interests in research, care and treatment of individuals with Shwachman-Diamond syndrome and other ribosomal insufficiency diseases to attend.

The congress will include multiple medical and scientific disciplines. Our goals are to facilitate international exchange and to encourage cooperation in research investigations for Shwachman-Diamond syndrome and related ribosomal insufficiency diseases.

Shwachman-Diamond syndrome is a rare genetic disorder involving multiple organ systems that leads to digestive problems, learning challenges and blood abnormalities with susceptibility to life threatening infections and leukemia. Recent studies have highlighted that the underlying mechanism of disease pathology hinges on ribosomal insufficiency.

Congress objectives

•exchange advances in clinical or basic research toward understanding of Shwachman-Diamond syndrome and its presentation,

•improve monitoring, care and treatment of Shwachman-Diamond syndrome,

•encourage emerging areas of research including developing paradigms in ribosomal insufficiency diseases and their treatments,

•strengthen relationships and develop research priorities for clinicians, researchers and foundations for continued benefits to patients.

6th International Conference on Children's Bone Health

22-25 June 2013 Rotterdam, Netherlands

The aim of this Conference is to bring together scientists and clinicians from a wide range of disciplines to gain a better understanding of the growing skeleton in health and disease. The scope ranges from basic molecular mechanisms to clinical aspects, from bone physiopathology to treatment and we invite anyone with an interest in bone metabolism and bone mass in children, adolescents and young adults to attend.

The Conference Programme is designed to present researchers, physicians, and allied health professionals with an overview of state-of-the-art research, with plenary lectures by some of the world's leading experts in the field, as well as workshops, Round Table discussions on topics linked to paediatric bone health, and oral and poster sessions.

The Conference will offer investigators from around the world an opportunity to meet with each other and with industry representatives.

Secretariat

For enquiries or to be added to our mailing list please contact our Conference Organiser:

Janet Crompton
iccbh@ectsoc.org

Tel + 44 (0)1453 549929
Fax + 44 (0)1453 548919

National Society of Genetic Counselors 32nd Annual Education Conference

NSGC 32nd Annual Education Conference October 9-12, 2013 Anaheim, California

The 32nd NSGC Annual Education Conference (AEC), October 9-12, 2013 will be held at the Anaheim Convention Center in Anaheim, California. The AEC annually offers a notable slate of presentations on a diverse range of topics, as well as educational breakout sessions that allow for a smaller group dynamic on specific areas of interest.

11th International CHARGE Syndrome Conference

July 25-28, 2013 Scottsdale, Arizona