In recognition of Rare Disease Day, Audentes Therapeutics announces their new “Be Bold for Courageous Patients” program. The new program affirms the company’s commitment to families affected by rare disease. The Audentes “Be Bold for Courageous Patients” program is comprised of three initiatives:

  • Support rare disease work. Provide corporate grants and contributions that aid the work of scientists, researchers, medical professionals, and advocacy groups that are finding ways to help the rare disease community and making a lasting, positive impact. In 2019, Audentes will contribute to more than 30 organizations.
  • Impact the patient community in a unique, positive way. Beyond research and development of innovative gene therapy products, Audentes wants to positively impact the lives of patients and families in a unique way, such as supporting The Painted Turtle and Double H Ranch medical specialty camps.
  • Evolve employee volunteerism companywide to further Audentes’ commitment to the patient community. All employees receive time off to volunteer for the organizations that most inspire them, focusing on the patient community.

The Painted Turtle

The Painted Turtle is a neuromuscular and genetic family weekend, held March 1-3, 2019, in Lake Hughes, CA. The Painted Turtle works year-round to give all children the opportunity to be kids in a safe camp environment. The Painted Turtle seeks to reach beyond illness, to inspire children with life-threatening diseases to become their greater selves.

Double H Ranch
Double H Ranch is a camp inspiration for children who are BiPAP or ventilator dependant. It’s held June 7-11, 2019 in Lake Luzerne, NY. The Double H Ranch provides specialized programs and year-round support for children and their families dealing with life-threatening illnesses.

Both The Painted Turtle and Double H Ranch are medical specialty camps that give kids with special needs a chance the enjoy going to camp. Both are part of SeriousFun Children’s Network founded by Hollywood actor and philanthropist Paul Newman.  All SeriousFun camps and programs are provided at no cost to families and rely on grants and donations to help them achieve their mission.

Families can apply for an opportunity to attend through the camp’s website and by following their application process.

Source: audentestx.gcs-web.com/news-releases/news-release-details/audentes-therapeutics-recognizes-rare-disease-day-launching-be

Tagged: advocacy, Rare Disease Day, respite