One of the most important parts of coping with a chronic illness like FSGS or Nephrotic Syndrome is being part of a community. Having a group of peers that can relate to what you are going through is a necessity when living with CKD. However, since these diseases are rare, finding a community to call home can be difficult. Luckily, NephCure gives you a variety of opportunities to connect with others and find comfort in a community of your peers! From informative educational workshops to fun-filled walks, there are so many ways for you to be a part of the NephCure family! We listed some of these opportunities below, so sign up for something interesting today and take an important step in your kidney journey.
NephCure Community Cafes
NephCure Community Cafes are FREE educational workshops held in-person across the country. This year, the topic of each workshop is “Live Your Best Life with Nephrotic Syndrome” and includes a panel with a nephrologist, a nutritionist, and a social worker. We have upcoming workshops in Austin, Baltimore, Nashville, Albuquerque, Ann Arbor, St. Louis, and Philadelphia! See the full list and REGISTER for a FREE workshop today!
NephCure walks are all about community support, family fun and raising funds to find a cure. More than fundraising, NephCure walks provide support for those lives that have been touched by Nephrotic Syndrome and FSGS. CLICK HERE to find a walk near you, or start a walk in your area by emailing firstname.lastname@example.org.
Peer to Peer support is important to NephCure, because we feel that patients and caregivers connecting with others and sharing lived experiences is an integral, complimentary part of coping with Nephrotic Syndrome and FSGS. This initiative allows you to ask for a “kidney mentor”, or allows you to join (or start!) a support group with people in your area. There are also online communities- such as NephSpace– that help you connect to others virtually. Learn more about Peer Connections HERE!
Webinars are a great way to connect with patients from all over the world! These FREE events focus on different topics and include a guest speaker. Upcoming topics include Being Your Own Advocate, The Unique Adult Experience, Sibling Support, and more! Check out all of our virtual programs HERE and register today!
Other Ways to Get Involved
There are unlimited opportunities for you to join our community, so check out our website to find what interests you. From research opportunities to galas, there is an opportunity for everybody to be a part of the NephCure family- CLICK HERE to see them all!