Warrior Moms: United in the Rare Disease Journey!

warrior moms

Connect with warrior moms who understand and inspire

We are a community of warrior moms – 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.

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Feature Article: Warrior Dad

TJ, Warrior Dad

TJ is a warrior Dad and the Executive Director of Ben’s Friends, as well as a rare disease patient himself. Currently celebrating his 47th wedding anniversary, TJ had to retire from his medical career due to his own illness and found solace in Ben’s Friends. With 14 adopted children, each facing their own special needs such as neurological disorders, cancer, autoimmune conditions, diabetes, and kidney disease, TJ’s family has navigated numerous challenges. Unexpectedly becoming caregivers to their grandchildren due to disability and the loss of their parents, they have embraced their unique journey. As they near the end of this chapter, with only two children left at home and a temporary resident of 24 years, they cherish the resilience and love that have carried them through.

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Parenting a Child With a Chronic Illness

Parenting a child with chronic illness is challenging, but it’s important to establish clear expectations, discipline, and consistent limits. Open communication, maintaining a predictable schedule, and promoting treatment adherence are key. Avoiding power struggles and offering choices can help the child feel in control. Self-care is crucial for parents, while encouraging children to express their feelings and providing coping strategies is beneficial. Working closely with the school during transitions is essential. By implementing these strategies, parents can effectively support their child with chronic illness and help them navigate the challenges they face.

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Latest Discussions

  • Warm Welcome to our New Members
    by BF_Admin on April 12, 2024

    Welcome, warrior moms @sgreenot and @cynthiacamila26 ! Here, you’ll find a community of fellow warrior moms ready to support, uplift, and celebrate with you every step of the way. You’re not alone on this journey. Together, we’re stronger! We love to hear your stories. 1 post – 1 participant Read full topic

  • Looking For Your Warrior Moms Stories
    by ModSupport on January 11, 2024

    @trust_level_0 Dear Warrior Moms Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to know about this wonderful service. To that effect, we are planning a social media campaign that will highlight the benefits of the Ben’s Friends online communities. We would like this to come directly […]

  • Two families, united by a rare disease, push for awareness and a cure
    by JCR on November 22, 2023

    Washington Post – 19 Mar 23 Two families, united by a rare disease, push for awareness and a cure Two girls in Virginia have the same rare genetic disease. Their families have bonded over their shared challenges and determination to help their daughters. 1 post – 1 participant Read full topic

  • From the Eyes of a Child: Having a Sibling with a Rare Condition
    by JCR on September 27, 2023

    Hi my name is Tatum and I’m 13 years old. I have an older sister named Avery who is 18. She has special needs and was born with a rare condition called Williams Syndrome. When I was younger, I remember always knowing she was different, but I wasn’t exactly sure why. As I matured, I started to understand more as to why she was different. I began to realize that everyone has something that may not be easy to deal with, but you have to roll with what life gives you. It was not easy though. I […]

  • Empowering Kids with Rare Diseases: Thriving Through School Challenges
    by benmunoz on August 21, 2023

    Children dealing with rare diseases can effectively handle school challenges through smart strategies and the right help. First, clear communication among parents, teachers, and school staff is key. This helps everyone understand the child’s special needs and work together to provide what’s necessary. Creating a customized learning plan, like an Individualized Education Plan (IEP) or a 504 Plan, can make sure the school environment suits the child’s needs. Empowering kids with skills to […]