Professional Meetings

Professional Meetings Hosted by NTSAD

Summit Meeting of the Allied Diseases
White Plains Renaissance, NY, April 2002
In 2002 NTSAD marked its 45th anniversary year as the oldest genetic disease organization in the nation by bringing together leaders of genetic disease community: clinicians, researchers, educators and patient advocacy groups to discuss the most recent developments in the field and to explore how to best advance the study and treatment of these rare disorders.

From its inception, NTSAD’s purview has encompassed more than 40 lysosomal storage and related diseases. The summit meeting built on NTSAD’s 45-year tradition of “inclusiveness” and provided attendees – regardless of background – with the opportunity to learn, to network and to consider ways in which we might work together to coordinate and consolidate our efforts in areas such as clinical care, genetic testing, research, therapy and advocacy. This meeting was supported with an educational grant from Genzyme Corporation.

Second Summit of the Allied Disease: Technology for the
Genetic Diseases of the Central Nervous System
Fort Lauderdale Renaissance, April 2004
TThe Second Summit of the Allied Diseases brought NTSAD’s philosophy of collaboration and inclusiveness to biotech pharmaceutical companies. StemCells Inc, PTC Therapeutics, Amicus Therapeutics, LysoPlex and Genzyme Corporation shared their translations research developments and discussed the role of the voluntary nonprofit health organization and how industry views the patient advocacy groups. This meeting was supported with an educational grant from Genzyme Corporation.

Third Summit of the Allied Disease, The Gangliosidoses: Past, Present and Future
New Orleans Hyatt, LA, April 2005
A collaboration with Tulane University Health Sciences Center and Louisiana State University Health Sciences Center This meeting focused the Gangliosidoses, especially as they have presented in this particular region of the country in an effort to bring the most current information about the diseases, in all their forms, to the practitioners and academics. Scientist presenters discussed the importance of collaboration, biochemical overview of glycosphingolipid biology and metabolism, a historical perspective of population genetics, clinical perspective of evaluation, diagnosis and disease management, the relationship between patient/family with physician, genetic counseling and the role of the patient advocacy organization in the physician’s practice. Patients and family also had the opportunity to share their experiences with infantile Tay-Sachs, GM-1, Juvenile Sandhoff and Late Onset Tay-Sachs. The meeting culminated with a discussion of treatment options today and tomorrow.

Scientific Workshop, Glycosphingolipids in Health and Disease
Hilton Mark Alexandria Center, VA, April 2006
Sponsored by the National Institute of Neurological Disease and Stroke and the Office of Rare Diseases of NIH, in collaboration with NTSAD The purpose of the workshop was to bring together scientists working in the fields of glycosphingolipid function in normal development with investigators interested in the pathogenesis of glycosphingolipid storage disorders and the approaches to therapy with the primary goal to review recent developments in the field and to identify research priorities and resources that will lead to successful therapies for these devastating diseases.

Professional Meetings Attended by NTSAD

The National Organization of Rare Disorders Annual Conference
The National Organization of Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Each year at the end of September the National Organization of Rare Disorders hosts its annual conference where representatives from patient advocacy groups and patients themselves gather to network, unify their advocacy efforts at home and on the Hill and develop the tools and resources to help their organization and/or disease move to the next level.

The Genetic Alliance Annual Conference
The Genetic Alliance is an international coalition comprised of more than 600 advocacy, research, and healthcare organizations that represent millions of individuals with genetic conditions and their interests. As a broad-based coalition of key stakeholders, we leverage the voices of millions of individuals living with genetic conditions. Annually in July, advocates, health professionals, policy-makers, industry professionals, and community leaders participate in cutting-edge workshops, offer informative lectures, and contribute to insightful discussions. This outstanding event offers resources for individuals conducting public policy work, providing support services, and participating in research initiatives. Building on a tradition of excellence, the Genetic Alliance celebrate advocacy through collaboration and open dialogue.

American Society of Human Genetics Annual Conference
The American Society of Human Genetics (ASHG) is comprised of 7500 professional members who strive to promote and expand research, apply knowledge to enhance health care, train the next generation of professionals and education and inform the public about genetics. The ASHG Annual conference is held annually in the beginning of October. This prestigious meeting is a unique opportunity for NTSAD to connect with leading researchers, develop relationships with scientists and promote collaboration and keeping the lysosomal storage diseases and the leukodystrophies in the fore front of research.

The WORLD Symposium (World Organization for Research on Lysosomal Diseases)
The WORLD Symposium is an annual meeting of multidisciplinary sessions to present and discuss basic and clinical research discoveries in lysosomal diseases and related treatment and quality of life issues. The symposium is open to physicians, scientists, patients, pharmaceutical industry, and others interested in lysosomal disorders.