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Consultation
Services

About:

Dr. Kendra Bjoraker provides specialized consultation services that bridge clinical research, education, and advocacy for individuals affected by rare genetic conditions. Her work includes collaborating on studies to document neurocognitive outcomes, assisting pharmaceutical companies in designing patient-centered therapies, and creating accessible educational materials for families and professionals. Through partnerships with advocacy groups, tailored care planning, and impactful speaking engagements, Dr. Bjoraker aims to empower patients, caregivers, and healthcare providers with the knowledge and resources needed to improve lives and advance understanding in the rare disease community.

A Drop of Hope ™

“When all you need is a drop of hope;

 and many times, a drop is all you have.” 

For without hope there is nothing. 

Kendra J. Bjoraker, Ph.D., L.P.  2007

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Expertise Rare Genetic Conditions

  • Lysosomal storage disorders

  • Peroxisomal disorders

  • Inborn Errors of Metabolism

  • Neurodevelopmental disorders

  • Neuromuscular disorders

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Education

  • Patient and Family Education
    Developing accessible resources to help families understand the cognitive, behavioral, and developmental impacts of rare genetic conditions.

  • Workshops and Training Programs
    Speaker for interactive sessions to empower families and professionals with practical strategies for managing neurocognitive and emotional challenges.

  • Content Creation
    Designing educational materials, including guides, videos, and infographics, to simplify complex medical and neuropsychological information for families, educators, and healthcare professionals.

  • School and Community Outreach
    Educating educators, therapists, and community members on the unique needs of individuals with rare genetic conditions.

  • Professional Development for Healthcare Providers
    Offering specialized training to medical and allied health professionals on the neurocognitive and behavioral dimensions of rare diseases.

  • Corporate Training for Industry Partners
    Partnering with pharmaceutical and biotech companies to provide insights into patient and family experiences, neurocognitive and mental health impacts, and effective communication strategies.

  • Collaboration with Advocacy Organizations
    Working with rare disease advocacy groups to create impactful campaigns and resources that raise awareness and support for affected families and the professionals serving them.

  • Tailored Consultation
    Providing customized educational sessions and guidance for families, professionals, and industry leaders to address specific needs and concerns.

  • Advocacy Organization Collaboration
    Working with rare disease advocacy groups to create impactful campaigns and resources that raise awareness and support for affected families.

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Consultation

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  • Neurocognitive Outcomes for Natural History Studies
    Collaborating on studies to document and analyze the cognitive and developmental impacts of rare genetic conditions, supporting research and patient care.

  • Neurocognitive Reviews for Pharmaceutical Companies
    Assisting in the design and evaluation of therapies by providing in-depth reviews of cognitive and behavioral outcomes, ensuring patient-centered approaches in treatment development.

  • Content Development for Rare Diseases
    Creating educational materials and resources that translate complex neurocognitive information into accessible, practical guidance for families, healthcare providers, and researchers.

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  • Comprehensive Education
    Explaining the developmental aspects of the condition in clear, accessible terms to empower families with knowledge.

  • Resource Navigation
    Connecting families to specialized healthcare providers, support networks, and educational services tailored to rare genetic conditions.

  • Individualized Care Plans
    Collaborating with families and healthcare teams to develop strategies that address cognitive, emotional, and behavioral challenges.

  • School Advocacy
    Supporting families in securing appropriate educational accommodations and interventions, including Individualized Education Plans (IEPs) and 504 plans.

  • Emotional Support and Guidance
    Offering compassionate support to families as they navigate the uncertainties of a rare diagnosis and the complexities of care.

  • Collaboration with Advocacy Groups
    Partnering with rare disease organizations to raise awareness, promote research, and amplify the voices of affected families.

Advocacy

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Research

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  • Neurocognitive Impact Studies
    Investigating how rare genetic conditions affect cognitive development, learning, and behavior across the lifespan. Investigating the cognitive, emotional, and behavioral impacts of rare genetic conditions to inform treatment and care strategies.

  • Natural History Research
    Documenting the progression of rare genetic conditions to understand long-term outcomes and inform clinical care and therapy development.

  • Development of Tailored Assessment Tools
    Creating and validating neuropsychological measures specific to the unique challenges of rare genetic disorders. Contributing expertise to track the progression of cognitive and mental health outcomes in rare genetic conditions, providing a foundation for future therapies.

  • Intervention Development and Evaluation
    Designing and testing targeted interventions to address cognitive, behavioral, and developmental needs. Evaluating and developing evidence-based interventions to address neurocognitive and mental health challenges in rare disease communities.

  • Quality of Life Studies
    Exploring how rare genetic conditions impact patients and families, aiming to enhance overall well-being through research-driven solutions.

  • Collaboration in Therapeutic Research
    Partnering with pharmaceutical and biotechnology companies to evaluate cognitive and behavioral outcomes in clinical trials for emerging treatments. Partnering with geneticists, neurologists, psychologists, and other researchers to create holistic models of care and study.

  • Advocacy Through Research
    Generating data to raise awareness and promote the importance of understanding rare conditions within the broader medical and research communities.

  • Mental Health in Rare Disease Populations
    Exploring the psychological effects of living with rare genetic conditions, including stress, anxiety, and coping mechanisms for patients and families. Studying the emotional and psychological impact on families and caregivers, promoting resources to support their well-being.

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Speaking

  • Delivering Impactful Presentations
    Presented at conferences, workshops, universities, and patient organizations, focusing on person-centered care in the rare disease community.

  • National and International Expertise 
    Brought extensive experience as a speaker on rare conditions, quality of life, and patient-centered care to diverse audiences worldwide.

  • Educational and Inspirational Presentations
    Combined evidence-based insights with heartfelt storytelling to foster understanding and advocacy for individuals and families affected by rare diseases.

  • Advocating for Compassionate Healthcare
    Emphasized the importance of compassionate language and meaningful connections in healthcare to inspire change and improve patient outcomes.

  • Tailored and Engaging Sessions
    Designed presentations to ensure actionable insights, renewed perspectives, and a sense of hope for audiences from various backgrounds.

  • Empowering Vulnerable Communities
    Dedicated to reaching individuals navigating rare condition diagnoses with empathetic and empowering communication to provide guidance, understanding, and hope.

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