National Family Caregivers Month (NFCM), which takes place each November, is a time to recognize and express gratitude for the more than 50 million Americans who provide care and medical assistance to their loved ones, including parents, children and siblings.

We’d like to take this time to thank caregivers in the U.S. for their selfless love, support and sacrifice to care for those they love. Read on to learn more about their incredible stories.

Living with AADC Deficiency – Meet the Heger Family

Kelly Heger went back to school and trained as a nurse after her daughter Jillian was diagnosed with AADC deficiency (AADCd), a rare genetic disorder, over 26 years ago.

Read about the Heger Family here

Sharing My Experience

Jason shares his perspective as a caregiver for his son with DMD.

Hope Is a Lifeline – A PKU Story

Heidi Maxfield is mother to a son with phenylketonuria (PKU) and sits on the Board of Directors at Intermountain PKU & Allied Disorders (IPAD). She shared her story to help spread awareness about PKU.

Read Heidi Maxfield’s story here

Finding the Balance

Missy learned to find the balance in her life as a caregiver.

Live Every Day Like the Best Day Ever

Laura and her family embrace Duchenne and aim to help her son, who was diagnosed with the disease, live his life to the fullest.

Find out how Laura and her family live life to the fullest, here

PTC is committed to supporting caregivers and those they care for – whether they are just starting out on their rare disease journey or already well into it. To empower patients and their families in their decision making, self-care and management of the various aspects of their journey, we created Insightful Moments™. This community education series consists of programs and materials covering a variety of important topics from navigating clinical trials to conquering stress.

Join us in celebrating caregivers!