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Current Projects

Capacity and Communication Workgroup

The Capacity and Communications Workgroup has a vital role in NYMAC’s communications strategy for upcoming projects to reduce the age of diagnosis of fragile X syndrome and to conduct a regional needs assessment.  The Workgroup will also continue to explore communication using social media.

Health Care Access and Financing Workgroup

  • Conducted a regional consumer survey to obtain first-ever information on benefit coverage, financial burden and other access issues. It was fielded in collaboration with various consumer organizations.  The results yielded details on actual consumer experiences. The findings will be included in a policy paper and be used to educate and advocate for genetic service needs. Preliminary findings were presented at the May Summit. Final results will be posted in the near future.
  • Develop a NYMAC region policy paper to educate policymakers, payers, providers, public health authorities and other interested parties on the gaps and barriers within the system and the support necessary to assure improved access to appropriate services. 
  • Coordinate and collaborate with other workgroups of NYMAC, the Regional Collaboratives and the National Coordinating Center to address access and financial barriers to medical foods, diagnostic testing and a variety of habilitative services based on a person’s condition.

Evaluation Workgroup

  • Develop evaluation measures for each of the projects being conducted by NYMAC
  • Modify the Advisory Council (annual) and Stakeholder surveys (biannual) to incorporate specific areas of interest
  • Field the Working Together survey a second time to examine collaboration and evaluate progress 
  • Complete the annual evaluation reports, including lessons learned
  • Contribute to the national evaluation efforts

Newborn Screening and Emergency Preparedness Workgroup

  • An educational campaign to improve timeliness in newborn screening including webinars for primary care providers and hospital staff.  A video will also be produced on newborn screening blood collection and timeliness.
  • An educational symposium on mucopolysaccharidosis, type 1 and Pompe disease including a discussion on barriers to implementation.

Primary Care Linkages and Strategies Workgroup

  • Medical Home Webinar Series: The objective is to provide educational opportunities and assess unmet needs related to access to genetic services
  • Sickle Cell Disease and Telemedicine: The objectives of the focus group meeting are to compile and assess unmet needs of establishing telehealth practices in different settings and create a list of items to increase the availability of telehealth in our region.
  • Fragile X education: The objective is to increase Fragile X education efforts for different stakeholders including PCPs and allied health professionals. This project will be implemented in conjunction with NYMAC Capacity and Communication Workgroup

Public Health Workgroup

  • Hearing Loss Needs Assessment Project: The goal is to assess unmet needs related to hearing loss screening and related genetic services in the NYMAC region.
  • Genetic Systems Assessment and Title V: The goal is to continue working with Title V programs in the NYMAC region to increase integration of genetics/genomics in public health approaches and programs.
  • Genetics/Genomics in Public Health Fellowship: The goal is to provide educational and leadership opportunities to genetic counseling/LEND trainees and clinical genetics residents/fellows regarding timeliness and access issues related to genetics services.