Why Joining Your Rare Disease Community Is ImportantWhen my son originally got his rare disease diagnosis back in 2020, I was told about a private Facebook group for families...reactionscomments
Working Remotely as a CaregiverWork is a place where you can meet people, make connections, and socialize. But in this new era of working from home...reactionscomments
3 Ways to Help Professionals Understand Your Rare DiseaseAs our family's rare disease community (VAMP2) continues to grow, I am often frustrated with the professionals who are giving this diagnosis...reactionscomments
What It Means to Celebrate Moments as a Rare Disease FamilyOn my journey, celebrating milestones isn't just about the milestone itself. It's also about our family's journey leading up to it. It's...reactionscomments
My Experience With New Jersey's Personal Preference ProgramHave you heard of state Medicaid programs that allow a family member or friend to become a paid caregiver? New Jersey's Personal...reactionscomments
3 Things I Learned About Doctors After My Son's Rare DiagnosisIf you or a family member are a rare disease patient, chances are it took quite some time to receive an accurate...reactionscomments
Finding Your Way After Your Child Is Diagnosed With a Rare DiseaseI remember being in the doctor's office and hearing my son would most likely never walk. As his mom, even though there...reactionscomments
Parenting and Rare Disease: 5 Bonding Activities to Try With Your ChildIf you are caring for a medically complex child, it can be difficult to find ways to bond, interact, and keep them...reactionscomments
Parenting and Rare Disease: A Journey Through Grief and AcceptanceThe day my amazing little boy was born, I knew he was different. I was 22 years old and forced to grow...reactionscomments
Why Caregivers Feel IsolatedBeing a rare caregiver comes with many challenges that the community as a whole can't relate to. Though every rare family is...reactionscomments
3 Ways You Can Help a Rare Disease CaregiverI am not going to lie and say that being a rare disease parent is easy. It is often a challenge for...reactionscomments
Caring for Hudson: Q&A With a Parent Managing Hypotonic Cerebral PalsyThe best thing that has come out of being part of the rare disease community is the passionate, loving, and optimistic people...reactionscomments
Being the Change: How My Advocacy StartedI remember the day the genetic counselor called me with my son's diagnosis. She gave me information about a paper published on...reactionscomments
Finding Joy While Raising a Child With a Rare DiseaseIt's hard to remember what my life was like before having a child with a rare disease. I became the caregiver of...reactions2comments
No Family Is the Same: A Caregiving Parent Perspective on DivorceAs a young child, I was surrounded by the most amazing family. There were family gatherings, family vacations, and memories. And then...reactionscomments
Big Moves for Better CareIn 2016, I gave birth to my first child at a military hospital while my husband was Active Duty Marine Corps. I was truly...reactions3comments
