Brothers Are One of Only Two Known Sibling Pairs with ROHHAD
Max Moore normally loved going on family walks with his mom Mandie, dad Devin, and brother Chase (age four at the time) throughout their neighborhood. But when he was eight…
Max Moore normally loved going on family walks with his mom Mandie, dad Devin, and brother Chase (age four at the time) throughout their neighborhood. But when he was eight…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
For the first year of his life, Warner Kays looked like an average, healthy, happy baby. He crawled around, took joy in family time with his older sister Presley, and…
For the first two years of his life, Rafe Hibben seemed to be progressing like a relatively healthy little boy. But when he was two years old, Rafe’s health went…
Katie Brown, age 15, loves learning Spanish, swinging, and special effects makeup. In the future, she is considering a possible career as a writer or a special effects artist; she…
For many people with a rare condition, sharing their story can be personally fulfilling—and it can help others realize that they are not alone. More so, shared stories can encourage…
Before you read on, make sure to check out Part 1 of our story. In Part 1, Lachlan's mom Donna discusses the long diagnostic journey, what symptoms Lachlan was showing, and how…
When Lachlan Lasikiewicz turned gray one day, his lips a frightening blue, his grandma and aunt didn’t panic. They simply wrapped him up in a blanket and held him close,…
Before you read, don't forget to check out Part 1 of our interview with Laura, Nicole's mom. In Part 1, we discuss Nicole's diagnostic journey, what acute lymphoproliferative syndrome (ALPS) is,…
Before you read on, don't forget to check out Part 1 of our interview. In Part 1, Alex discusses the multi-year diagnostic odyssey to discover that Raymond has VAMP2. Today, we talk…
In the United States, rare diseases are defined as those affecting fewer than 200,000 people. In the cases of ultra-rare conditions, there is often even less research, less resources, and…
Sydney Miller, born in the UK in March 2020, has an extremely rare disease. Newsweek recently carried a story about Sydney and her illness. This little girl captured the hearts…
Rare diseases often need extra support when it comes to research and drug development. Luckily, MMS Holdings Inc. (MMS) plans to provide some with their new support program. The program,…
As originally reported in the Washington Post: many parents of children with rare diseases are familiar with the agony of mystery surrounding their children’s medical conditions. The frustration of searching…
Tomorrow is Bohring-Opitz Syndrome (BOS) Awareness Day! If that illness doesn't sound familiar to you - you're not alone. BOS is a very rare disorder; so rare that estimates number at…