CCD Smiles is a nonprofit organisation dedicated to improving the lives of individuals and families affected by Cleidocranial Dysplasia (CCD). Founded in 2017, the organisation exists to provide meaningful support, increase awareness, and improve understanding of this rare genetic condition on a global scale.

Mission and Purpose

The mission of CCD Smiles is to enhance quality of life for those living with CCD through connection, awareness, education, research support, and advocacy. Their work is centred on empowering individuals and families by giving them access to reliable information, supportive communities, and resources that help them navigate the challenges associated with CCD.

Building a Supportive Community

A core focus of CCD Smiles is creating a strong and welcoming community. They connect people affected by CCD with others who share similar experiences, helping reduce feelings of isolation. Through online platforms, newsletters, social media, and in person events, CCD Smiles encourages connection, shared learning, and mutual support among individuals and families worldwide.

Education and Public Awareness

CCD Smiles places strong emphasis on education and awareness. They provide clear and accessible information about CCD for families, educators, and the general public. The organisation also works to raise awareness within the medical and dental communities, helping professionals better understand the condition and the specific needs of people living with CCD.

Medical and Dental Support

Navigating medical and dental care can be complex for individuals with CCD. CCD Smiles supports families by helping them identify experienced healthcare professionals and specialists who are familiar with the condition. They also provide guidance and resources related to dental care, which is often a significant aspect of managing CCD.

Research and Advocacy

CCD Smiles actively supports research efforts aimed at improving diagnosis, treatment options, and long term outcomes for people with CCD. In addition, the organisation advocates for better access to medically necessary care, including insurance coverage and policy improvements that directly affect individuals living with CCD.

Founder and Lived Experience

The organisation was founded by a nurse practitioner who also lives with CCD. Her professional medical background combined with lived experience has helped shape CCD Smiles into an organisation that understands both the clinical and personal realities of the condition. This perspective plays a key role in the organisation’s compassionate and informed approach.

Ongoing Impact and Resources

CCD Smiles continues to expand its impact through educational content, awareness campaigns, conferences, and shared stories from individuals affected by CCD. Their website serves as a central hub for information, inspiration, and connection, offering practical tools and encouragement for people at all stages of their CCD journey.

Visit www.ccdsmiles.org