We believe every Barth family deserves community and connection and are allocating more than $40,000 in funding to the family travel program. Because we want to help as many eligible families as possible, funding will be capped for each family to support their travel costs to Conference.
Review of the following information is a requirement of applying for financial assistance from the Barth Syndrome Foundation Travel Assistance Fund which is funded by the generosity of the Barth Syndrome Foundation (BSF) donors and contractually managed by the National Organization of Rare Disorders (NORD).
Each application will be limited to one affected individual + one travel companion. If you have multiple people in your family with Barth syndrome diagnoses, please submit an application for each person in the family who has a diagnosis of Barth syndrome and wishes to attend the Conference.
Complete the travel assistance application through NORD’s website here. The deadline to submit the request is Friday, April 24th at 11:59 PM ET.
Individuals with a Barth syndrome diagnosis may apply for two-person assistance that includes the affected individual and a travel companion. Please note that proof of diagnosis must be provided. Parents and guardians of an individual, living or deceased, who has or had been diagnosed with Barth syndrome may apply for one-person assistance. This assistance is limited to one applicant if they are traveling without the affected individual.
You may apply for assistance again. Please note that the Barth Syndrome Foundation will prioritize assistance for those who have not attended a Barth Syndrome Conference in the past.
Travel funds are not limited to United States applications, and applicants from other geographies may be eligible.
Travel assistance funds three components.
Stipends will likely not cover all out of pocket expenses but have been established to minimize the need for recipients to use personal funds. Only one travel stipend will be issued for unaffected family members who are traveling without an affected individual. Booking of air and ground transportation for the conference is the responsibility of the attendee.
Our funding for this program includes more than $43,000 in travel assistance provided by the Barth Syndrome Foundation for families to be able to attend the 2026 Conference.
Our partners at the National Organization of Rare Disorders, NORD, will evaluate applications based on:
You will need to book your own flights / transportation to Conference. You do not need to book your room at the Conference venue – it will be in your name when you check in to the hotel. Please note, you will be required by the hotel to provide a credit card upon check-in to cover incidentals and damages.
Attendees accepting travel assistance will be expected to attend more than half of the event sessions that are appropriate for you.
Attendees will also be required to submit a testimonial about the value of attending the Conference which may be shared with donors who help make this program possible.
Failure to meet the terms of acceptance may impact your eligibility for future scholarship funding through this program.
Please reach out to BSF personnel with subject line: “2026 Conference Family Travel Fund Inquiry” with any questions you might have about the application process or the conference in general.
