The diagnosis of Relapsing Polychondritis can be a scary and daunting experience. It is important to understand and to be able to communicate about your disease to both health care professionals and to your loved ones.
Keep-in-Touch (KIT) was developed to link persons with Relapsing Polychondritis (RPC) together with others in their community or region when possible. To establish community or regional support groups that help support those with RPC and to bring awareness of RPC to you and your community. To help you understand the disease at various stages and in various people, several support groups are available. One of the most important functions of a support group in Relapsing Polychondritis is to be able to talk with others who have this disease. As rare as this disease is, it is not uncommon to find that no one you know has ever heard of it.
KIT members are members of the Polychondritis Educational Society; persons with Relapsing Polychondritis, their family members who are over the age of 18 years old. Parents or legal guardians of minor children are encouraged to join on behalf of their child. We are not medical care advisors we are only sharing our own personal experiences with Relapsing Polychondritis with others.
As a support group there will be an open exchange of personal and private information. How much information you choose to disclose is your choice. We do ask that you act with discretion before giving out any personal information or private information. While we hope that all people within KIT will keep our confidences we can not guarantee that your personal information will be kept confidential.
Children: Protecting the privacy of the very young is especially important. Any information exchange regarding children under the age of 16 will be obtained through their parents or legal guardians only. We adhere to the 1998 Children’s Online Privacy Protection Act (COPPA).
The Polychondritis Educational Society, ltd., and all services are funded solely on the kindness of the Relapsing Polychondritis Community.
