You don’t have to figure this out alone.

1:1 Meetings

Our one-on-one meetings connect you with an advisor who can help you navigate challenges, identify trusted resources, and explore ways to advocate for yourself or your loved one. Our sessions are a safe space to share your story, ask questions, and get real answers from people who’ve walked this path before.

APDS Advisors

  • Gordon Kelley is the Founder of the APDS Rare Disease Coalition and a passionate advocate for families navigating rare diseases. Living with APDS himself, he created the Coalition to connect patients, provide education, and promote understanding through awareness, collaboration, and hope.

  • My name is Damian. I am 37 years old and I currently live in the Southwest US. My APDS symptoms have consisted of upper respiratory infections, including numerous bouts of bronchitis and yearly pneumonia, on top of the frequent colds and ear infections, which made for a very sickly childhood experience ever since infancy. In December 2017, I was diagnosed at the National Institutes of Health (NIH), and getting diagnosed has enabled me to be more aware of how to best take care of myself. But my diagnosis is not who I am as a person. It is simply one aspect of my existence. I spend my days working full time, as well as indulging in my hobbies and interests, including Brazilian Jiu-jitsu, cooking, art, crocheting and knitting. I want to see what life has to offer me now that I know how to better take care of myself after receiving my diagnosis.  I am a firm believer in self-advocacy, speaking up for what you need from your caregivers and healthcare providers in order to have a better quality of life.

  • Coming Soon!

  • Coming Soon!