NTAP Call for RFAs: Cutaneous Neurofibromas

Apr 20, 2017, Posted in Collaborations, NF1, Outside Opportunities, Science

Neurofibromatosis Therapeutic Acceleration Program (NTAP) is launching a new research program focused on understanding the pathogenesis of cutaneous neurofibromas. NTAP is a philanthropic research entity based at Johns Hopkins University dedicated to the discovery of therapeutics for the peripheral nerve tumors that afflict people with neurofibromatosis type 1 (NF1). Cutaneous neurofibromas represent a major unmet need for NF1 patients. This research program sets the blueprint for improving therapeutics for these tumors by encouraging research proposals that improve the Understanding of Cutaneous Neurofibromas

Recruiting for a research study aimed at helping adults with NF2

Mar 16, 2017, Posted in NF2, Outside Opportunities, Science

The Family Center for Neurofibromatosis at Massachusetts General Hospital is conducting a research study aimed at helping adults with NF2 who are deaf or have severe hearing loss manage stress associated with NF2

Call for Applications for the class of 2017 Francis S. Collins Scholars

Jan 9, 2017, Posted in NF1, Outside Opportunities, Science

The Neurofibromatosis Therapeutic Acceleration Program (NTAP) is now accepting applications for the Francis S. Collins Scholars Program in Neurofibromatosis Clinical and Translational Research. The Collins Scholars program brings together a community of exceptionally well-trained clinician scientists who will be leaders in the field of NF1 research.

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Survey on Social Media and NF

Oct 24, 2016, Posted in Outside Opportunities, Science

You are invited to participate in a study of the effects of social media and support groups on feelings of isolation and self-esteem that may arise in individuals with neurofibromatosis (NF). Participation involves completing an online questionnaire. The questionnaire also assesses the feelings that individuals in the NF community have towards the representation of the NF in social media.

Genome magazine announces essay contest for patients and families

Jun 1, 2016, Posted in Outside Opportunities

Genome magazine and the National Society of Genetic Counselors (NSGC) recently announced the inaugural Code Talker Award — an essay contest for patients and their families to honor a genetic counselor who has left a lasting impact on them. 

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