Barth Cares Program

It is not uncommon for someone who has Barth syndrome to spend a great deal of time in the hospital.  This can be financially devastating and emotionally isolating.  Sometimes knowing someone cares can be the best medicine of all.  This is where our Barth Cares Program comes in. 

The Barth Cares team members are dedicated, compassionate volunteers who are here to offer encouragement during the most trying of times such as hospitalizations, transplantation, or loss of a loved one.  We are here when you need us.

Barth Syndrome Emergency Relief Program

We understand the financial burden that can be caused by a hospital stay or the passing of a loved one with Barth syndrome.  For this reason, BSF has funded the Barth Syndrome Emergency Relief Program through the National Organization for Rare Disorders (NORD).  

Learn more here

eCards

Our Barth Cares team is here to offer encouragement when the person with Barth syndrome is ill and to celebrate their milestones.  After all allies are there in the good times too.  We will send an eCard on your behalf to the person in our community who has Barth syndrome. 

Learn more here

Get Well Cookies

Upon request we will send a tin of cookies to the individual who is admitted for an extended stay at the hospital.  

Complete request here

Barth Buddy Bear

People with Barth syndrome may require a heart transplant.  We will send them a Buddy Bear to get through that journey. 

Complete request here