CLAPA

CLAPA is the only UK-wide voluntary organisation specifically helping those with, and affected by, cleft lip and palate. It is unique.

CLAPA was set up in 1979 as a partnership between parents and health professionals. It provides support for new parents, and for people with the condition and their families, from infancy through to adulthood.
CLAPA Head Office is based in London with a network of branches (branches are all run by volunteers) and many other regional contacts in the United Kingdom, all committed to providing the support needed by families affected by cleft lip and/or palate.
Branches are run by people who have themselves benefited from the organisation, often working in partnership with local health professionals.
Clapa's key functions are to:

• Organise local parent-to-parent support through its nation-wide network
• Run a specialist service for parents and health professionals seeking help feeding babies with clefts
• Develop support for children and adolescents affected by clefts at school and in social settings through such activities as confidence-building camps
• Encourage and support research into causes and treatment of cleft lip and palate
• Represent the interests of patients and parents, influencing policy on future treatment of cleft lip and palate
• Conduct educational seminars for health professionals and the general public
• Raise funds in the community for equipment, literature and services
• Publish and distribute a range of information leaflets, increasing public awareness of the condition
• Support projects in countries where cleft treatment is limited or unavailable

References
http://www.clapa.com/