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AUCD Community Inclusion

AUCD’s Community Inclusion Team supports the University Centers for Excellence in Developmental Disabilities (UCEDD) Network in partnership with the Administration for Community Living.

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AUCD Maternal and Child Health Engagement

AUCD’s Maternal and Child Health Engagement supports the Autism CARES Programs, including LEND and DBP Programs.

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AUCD Public Health

AUCD’s Public Health Team works to create health promotion and public health efforts that include people with disabilities.

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AUCD Emerging Leaders Community

AUCD Emerging Leaders are a part of a community that includes trainees, early career professionals, self-advocates, and family members from AUCD member Centers and Programs.

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Project

Fragile X Clinical and Research Consortium

Center:

KS-Schiefelbusch Institute for Life Span Studies, UCEDD/LEND

Fiscal Year:

2013

Contact Information:

Rene Jamison
[email protected]
913-588-5590

Project Description:

The National Fragile X Foundation (NFXF) worked with select medical institutions to develop the idea for the FXCRC in 2006, with two primary goals: 1) Coordinate a nationwide effort that would help meet the increasing demand for expert services in local communities. 2) Foster the dissemination of scientific and clinical data among researchers and providers. Rationale & Benefits: Facilitate new clinics and standardize care, Facilitate clinical trial network for sufficient recruitment & location for trials., FXCRC Registry and Database to support goals. Our membership provides opportunities for national collaboration with other institutions and opportunities for drug trials related to Fragile X and ASD.

Keyword(s):

Fragile X, research, database

Core Function(s):

Training Trainees, Performing Direct and/or Demonstration Services, Performing Research or Evaluation, Continuing Education/Community Training

Area of Emphasis

Health-Related Activities

Target Audience:

Students/Trainees (long or intermediate trainees), Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN

Unserved or Under-served Populations:

Specific Groups

Primary Target Audience Geographic Descriptor:

Single-County, Mulit-County, State, Regional, National

Funding Source:

COVID-19 Related Data:

N/A

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