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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Inclusion body myopathy with early-onset Paget disease and frontotemporal dementia


Other Names for this Disease

  • IBMPFD
  • Inclusion body myopathy with Paget disease of bone and frontotemporal dementia
  • Limb-girdle muscular dystrophy with Paget disease of bone
  • Pagetoid amyotrophic lateral sclerosis
  • Pagetoid neuroskeletal syndrome
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Conferences


ORDR-Sponsored Conferences

  • The Spectrum of Caregiving and Palliative Care in Rare Diseases, Tuesday, June 09, 2015 - Wednesday, June 10, 2015
    Location: NIH Natcher Conference Center, Bethesda, MD
    Description: The findings and recommendations resulting from the Workshop will provide guidance to the extramural community as well as to NINR and other Institutes, Offices (e.g., ORDR), and agencies in developing strategies for advancing the science of palliative care and caregiving in rare disease and research programs. It is anticipated that a funding opportunity announcement will result from the Workshop.

  • 9th International Conference on Frontotemporal Dementias, Wednesday, October 22, 2014 - Saturday, October 25, 2014
    Location: Vancouver, BC, Canada
    Description: <p>The 9th International Conference on Frontotemporal Dementias (ICFTD)<span>&nbsp; </span>is held every two years and is the only regularly scheduled international conference devoted to Frontotemporal dementia (FTD), making it an important opportunity for FTD clinicians, researchers, trainees and caregivers from around the world to share knowledge with the goal of improving care for patients with this devastating neurodegenerative disease. This is a particularly exciting time in FTD research as significant recent advances in our understanding of the molecular basis of FTD now provide us with the foundation for the rational development of targeted therapies. It is anticipated that the 2014 conference will attract more than 600 international delegates.</p>

  • Economic Considerations in the Development of Therapies for Neuromuscular Disease, Sunday, September 21, 2014 - Tuesday, September 23, 2014
    Location: Beaver Hollow Conference Center, Java Center, NY
    Description: <p>The goals of the conference are:<span>&nbsp; </span>1.) To provide an informal environment away from competing activities for the interaction/ development of collaborations among established investigators and between senior and new/junior investigators, and to present a collaborative environment for new project development among investigators.<span>&nbsp; </span>2.) To offer senior investigators opportunities to determine the appropriateness of sites/investigators to participate in new trials, providing an entry point for junior trainees/investigators to become involved in studies.<span>&nbsp; </span>3.) To provide an opportunity for industry representatives to interact with clinical investigators to discuss collaboration.<span>&nbsp; </span>These discussions will increase investigator involvement with new industry therapeutics.</p>

  • RDCRN 3rd Conference on Clinical Research for Rare Diseases, Tuesday, October 02, 2012
    Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
    Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases.

Other Names for this Disease
  • IBMPFD
  • Inclusion body myopathy with Paget disease of bone and frontotemporal dementia
  • Limb-girdle muscular dystrophy with Paget disease of bone
  • Pagetoid amyotrophic lateral sclerosis
  • Pagetoid neuroskeletal syndrome
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.