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Rare disease network nih


rare disease network nih

On November 3, 2016 the, rare Diseases Clinical Research Network (rdcrn) hosted the 4th Conference on Clinical Research for Rare Diseases (ccrrd) in Washington.C.
The Lysosomal Disease Network (LDN) is pleased to announce that it has selected Laura Adang, MD, PhD of The Childrens Hospital of Philadelphia for a slender all game modes fellowship that provides 50,000 for lysosomal disease clinical research.
Utilizing NIH funding, this research grant provides 50,000 total costs (direct and indirect costs) for the period August 1, 2017 July 31, 2018.Area; two 1-hour webinars per month; completion of a mentored research project with culmination in a poster presentation at a rdcrn meeting in the Washington,.C.The Lysosomal Disease Network encourages lysosomal disease patients or their families to register.Information about the Training Program will be posted here on the LDN home page as soon as it becomes available.Marc Patterson, Director, Education Core of the Lysosomal Disease Network, said The Lysosomal Disease Network looks forward to a very productive research project, and wishes.This is a method by which patients with lysosomal diseases can register themselves online with the rdcrn in order to be contacted in the future about clinical research opportunities and updates on the progress of the research projects.Applicants must identify a mentor with an appropriate track record in lysosomal disease research.



Twenty applicants will be accepted for a funded position.
Patients, their family members/caregivers, and patient advocacy group representatives are invited.
Rdcrn principal investigators meeting, attended by the principal investigators of all of the twenty-two rdcrn research consortia, was held in Washington.C.
Questions can also be sent to that e-mail address.
Jeffrey Krischers presentation slides from that meeting can be found here (clicking on this link results in.8 MB download to your computer).Submission deadline: Application deadline was June 1, 2017.Adeline Vanderver, also with The Childrens Hospital of Philadelphia.Her research project is entitled Metachromatic leukodystrophy: characterization of genetic mutations, age of onset, and clinical subtypes.Topics include: statistics in small populations, interactions with industry and pharmaceutical companies, successful grant writing, working with patient and family advocates and groups, research career design and planning, and successful publishing in rare diseases.




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