I am excited to announce that The B.L.A.I.R. Connection has recently partnered with Patient Worthy. Patient Worthy is a rare disease news...

Hello, my name is Sofia and I’m 10 years old. I’m from Portugal and I’m learning English. I have a sister named Joana, she is 15 years...

Looking at the world of rare diseases and serious illnesses in children, so much of the focus jumps to the child with the diagnosis, and...

One gene One cell One little mishap One gone wrong None goes well The disease The struggle Come together Make their lives For the better...

Soy Jan Ballbè Perés y en casa vivimos mi madre, su marido, los dos hijos de su marido, los tres que somos hijos de mi madre y la Ivet la...

This piece is by Stefanie Boyce, mother of Ellie, Jayden, & Brooklyn. Jayden & Brooklyn passed away due to Sanfilippo Syndrome and Ellie...

On Monday, February 4th, I had the opportunity to speak in front of doctors, scientists, and lysosomal disease families about sibling...

If you attend a conference of rare disease families, you might not even notice that many of those who are helping out with all aspects of...

Welcome to the newest addition to The B.L.A.I.R. Connection website, the “Be Positive” Collection. I am hoping to publish more...

What is your favorite memory with your sibling? 1st question of the ‘Be Positive‘ Collection Sophia Sarkar: My favorite memory with...

What is/was your favorite activity to do with your sibling? 2nd question of the ‘Be Positive‘ Collection Sophia Sarkar: I love to run...

What is/was your favorite place to go with your sibling? 3rd question of the ‘Be Positive‘ Collection Sophia Sarkar: Disney World is my...

What is/was your favorite show or movie to watch with your sibling? Book to read? 4th question of the ‘Be Positive’ Collection Sophia...

In what ways did your sibling change you for the better? 5th question of the ‘Be Positive‘ Collection Sophia Sarkar: Having Carter as my...

Grown from pure energy, clipped claws scraping on loose rocks, and damp nose searching for treats is Poppy: a compact and sleek black...

As November, which is National Caregiver Month, is coming to an end, I’d like to share this guest blog post written by one of Blair’s old...

The B.L.A.I.R. Connection is a support website for siblings of terminally ill children. I started this website in April of 2018, but it...

This passage is from an article in The Globe and Mail. It is written by Jessica Mason, whose sister, Elisa, passed away due to Sanfilippo...

I peered over the sloping back of the couch, vision divided between peacock patterned fabric and white doorway. My mother blindly cupped...

My name is Jax Koch and I have a special needs brother with Sanfilippo Syndrome. His name is Alex. We live outside of Nashville,...