Get Involved - Registry

Together we can accelerate innovation and research and improve the
quality of life for FGFR patients

    For Researchers

    Drive Research

    This is a unique rare disease patient registry. Are you interested in using our data to further your rare disease research?

    For Patients

    Get Involved

    The information collected during the FGFR Syndromes Research Registry is patient-owned, patient-run, and IRB-approved. 

    HELP Educate

    • What is a Registry?
    • Why is it Important?
    • Registry Findings
    • Keep everyone informed on current scientific developments.

    HELP Promote

    • Reach out to Craniofacial Teams
    • Foster Relationship with Craniofacial Teams
    • Send out Emails
    • Send out Material
    • Provide Resources to Craniofacial Teams

    Why Join the FGFR Syndromes Registry Team?

    The FGFR Syndromes Registry is a vital resource for understanding the impact of FGFR-related rare diseases. By joining our team, you’ll play a key role in advancing research, improving care, and connecting families impacted by FGFR syndromes. Here’s why you should get involved:

    1. Make a Tangible Impact on Rare Disease Research
      • Your work will directly contribute to a deeper understanding of FGFR syndromes, which can lead to better diagnosis, treatment options, and overall care.
      • Help build a comprehensive registry that researchers and clinicians can use to drive advancements in personalized care for patients.
    2. Empower Patients and Families
      • As part of the team, you will help connect families and patients with a supportive network, allowing them to share their experiences and contribute valuable data to improve outcomes for others in the community.
      • By expanding the registry, you’re ensuring that families have access to critical information and resources they need for better care and advocacy.
    3. Drive Policy Change and Awareness
      • Data from the registry can be used to advocate for more resources, research funding, and better policy support for FGFR-related rare diseases.
      • Help bring visibility to the importance of rare diseases and empower communities to raise awareness at a state and federal level.
    4. Contribute to the Future of Healthcare
      • Your role will directly support the development of evidence-based practices and clinical guidelines. The more robust the registry, the more it can contribute to the future of rare disease treatment and prevention.
      • You’ll be part of a dedicated team that’s helping to improve the lives of patients and families today—and for generations to come.
    5. Gain Experience and Build Connections
      • Work alongside leading healthcare professionals, researchers, and advocates in the field of rare diseases.
      • Gain invaluable experience in medical research, data management, and patient-centered care that will support your personal and professional growth.
    Register for the FGFR Syndromes Research Registry