Click below to learn more about what you can do for the Batten disease and rare disease communities this Rare Disease Week!

SHOP

There are three current shopping fundraisers that BDSRA will receive proceeds from!

ADVOCATE

The Senate Special Committee on Aging has announced it will hold a hearing to examine the FDA’s role in the rare disease community. The hearing will be held on February 26 at 9:30 AM EST in room SH-216 of the Hart Senate Office Building. 

  • You can stream this hearing here. 
  • As stated by the EveryLife Foundation for Rare Diseases, “In recent months, several difficult regulatory decisions have affected clinical trials and review timelines for products with direct implications on the rare disease patient community (for example, complete response letters, refusals to file, and incomplete response letters).”
  • If you are a member of a patient community affected by these decisions, EveryLife wants to hear from you. 
  • View the full Rare Disease Week on Capitol Hill agenda here.

CREATE A FAM FUND

The BDSRA Foundation Fam Funds Program empowers our Batten families to share their Batten journeys, connect with fellow families, and raise funds for BDSRA. Those who sign up for the program can pick their own Fam Fund name to represent their child or family and get a personalized web page with a unique URL hosted by BDSRA for them to share their story with a way for those in their community, and allow them to make a life-changing donation in honor of their affected child(ren). 

Families can direct their Fam Fund Donations to the mission areas that mean the most to them within the BDSRA Foundation:

  • Greatest Need
  • Support
  • Research
  • Advocacy

DONATE

From writing a check, donating online, and employee match, there are different ways everyone can give to the BDSRA Foundation. Click below to see them all!

VOLUNTEER

Joining us in Chicago for the BDSRA Annual Family Conference July 10-12? We need volunteer help for our various conference committees! No prior experience is needed. Click below for details!

LEARN MORE ABOUT OUR PROGRAMS

Have you heard about the Batten Disease Clinical Center of Excellence Program and the Batten Disease Global Research Initiative? Get to know these programs today!