Welcome to the Warrior Moms Living with Rare Disease Community!
We are a community of strong, passionate, and caring moms who are dedicated to supporting each other through the challenges of raising a child with a rare disease.
Caring for a child with a rare disease can be overwhelming and isolating, but you are not alone. Here, you’ll find a safe and supportive space to share your experiences, ask for advice, and find resources to help you and your child thrive.
As a member of this community, you’ll have access to a network of warrior moms who understand the unique challenges of caring for a child with a rare disease. You’ll find strength in connecting with others who have similar experiences, and you’ll have a platform to share your own story and inspire others.
We encourage you to ask questions, offer support, and engage in meaningful conversations with other members of the community. Whether you need advice on managing symptoms or want to share a small victory, this is the place to do it.
We’re committed to providing you with the resources you need to be the best warrior mom you can be. From educational articles and expert advice to community events and local resources, we’re here to help you navigate the ups and downs of your journey.
Thank you for joining us on this journey. We’re honored to have you as a member of the Warrior Moms Community and we look forward to supporting you every step of the way.
Although Primarily a resource for mothers of rare disease patients warriormomslivingwithraredisease.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices “should” be. We might inform your choices by sharing individual experiences and information developed by study as lay people. But warriormomslivingwithraredisease.org is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.
We don’t want you to identify yourself or tell exactly where you live: it is important to us that you should be anonymous here. That encourages openness. (And that’s a major way that we’re different from social media and other disease support sites.) Nevertheless, visitors should also be aware that our discussion forums and groups are publicly accessible and frequently searched by Google. That’s why your speech here should be considered “public”. If you’re tempted to write something about another person that you wouldn’t say to their face, then we counsel you to think first. Speech can be consequential.
warriormomslivingwithraredisease.org/ is supported by unpaid volunteer moderators who validate and register new members and monitor ongoing discussions, photo postings and blogs. Very often, moderators are themselves patients or family members of patients. Most of the time, moderators tend to keep a low profile, except in their roles as members of the community, especially if they are well-informed about the state of medicine and research.