Sponsors basic and clinical research as well as a public education program including self-help groups and seminars. Provides information to patients and eye care practitioners.
The National Keratoconus Foundation (NKCF) is dedicated to disseminating information about keratoconus to patients, their families, and eye care professionals. NKCF does this by publishing and circulating literature and by sponsoring local seminars to keratoconus patients and eye care professionals on the local level to foster mutual dialog and support and to raise funds and support for scientific research into the causes, treatment, and possible cure of keratoconus.
Patient Information Guides The booklet, “What is Keratoconus? A Reference Guide for Patients and their Families,” explains keratoconus in easy-to-understand language. It is available to patients and eye care providers worldwide (in English and Spanish). The booklet, “Corneal Transplant Surgery: A Reference Guide for Patients and their Families,” offers a comprehensive overview of transplant surgery to help the individual better understand the surgery and what to expect both before and after the operation (in English and Spanish). KC-link KC-link is a free e-mail-based mail list for keratoconus (KC) patients and their family members. It offers those with keratoconus a unique opportunity to share their “KC” experiences and concerns with others who understand the frustrations of this condition. There are more than 2,300 members, posting more than 300 messages a month. NKCF Newsletter NKCF Newsletter is sent to more than 19,000 patients worldwide. It offers information on current research, new treatment options, and insight into how others cope with keratoconus. NKCF Outreach Program/“Transplant Buddies” NKCF maintains a list of volunteers for those individuals who want personal contact with other keratoconus patients. NKCF Patient Education Seminars NKCF sponsors Patient Education Seminars in cities throughout the United States. NKCF Support Groups NKCF offers information and guidance to individuals who wish to form local support groups. NKCF Referral Service NKCF offers a list of eye care providers who have special expertise in treating keratoconus. NKCF Research Program NKCF sponsors a KC Roundtable Discussion Group each year at the Association for Research in Vision and Ophthalmology (ARVO) annual meeting. This meeting offers an international group of scientists, ophthalmologists, and optometrists the opportunity to discuss the latest research in keratoconus as well as ongoing and future projects. NKCF Tissue Procurement Program The NKCF Tissue Procurement Program was developed to increase the number of keratoconus tissue samples available to scientific laboratories. Keratoconus only occurs in human corneas; an animal model cannot be used for research purposes. Human cornea tissue, which can be obtained only at the time of corneal transplant surgery, is needed for scientific research. NKCF provides a protocol and mechanism for tissue collection and distribution from the corneal surgeons and eye banks to the laboratories conducting keratoconus research. The NKCF also assists in the recruitment of participants for genetic and clinical research studies.
Roundtable Discussion Group at ARVO (annual)
NKCF E-Update NKCF E- Newsletter What is Keratoconus? A Reference Guide for Patients and their Families (in English and Spanish) Corneal Transplant Surgery: A Reference Guide for Patients and their Families (in English and Spanish)