News

By: Charlotte Bedford, United Kingdom Millie was born in 2010, after a normal pregnancy and birth. It soon became apparent that Millie wasn't gaining the weight, and we were given the diagnosis of "Failure to Thrive".  Months of high calorie milk and tests...

by Cecile Garaud Robin est un petit guerrier, je l'ai su dès que le test a viré au bleu.  Une conviction qui s'est affirmée tout au long de cette grossesse qui a pris la forme d'un marathon, d'un parcours d'obstacles que l'on a franchi avec courage, un mois après...

By: Julie Hill Rare is proud, rare is strong, and this is our story so far… After many years of IVF, we had our first-born Isaac, who was born 13 weeks premature.  But still I longed for another baby. We lost a baby in between and around the due date of this...

By: Maree Grover, Australia  Our daughter Olivia is the fifth in our family of five children and was born in June 1985. She was a smaller baby than her siblings and I had been very unwell for all of that pregnancy. Olivia was a breastfed baby until about 8 months...

The following is a story about the strength of Brandon from Pennsylvania, USA in his mother’s words:  Brandon is our 17-year-old WSS Warrior and is the true definition of “Rare is STRONG.”   We received Brandon's WSS diagnosis in 2017, so a little later...