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Making a Rare Impact

Patients, caregivers, advocates and scientists win 2021 awards from the National Organization for Rare Disorders.

Rare Impact Awards June 2021

They’re legislators, hard-working advocates, caregivers and research scientists. One of them creates fabulous cakes. But the winners of the Rare Impact Awards have one thing in common: They believe wholeheartedly in the cause of rare diseases.

“Your dedication, commitment and energy makes a difference,” said Peter Saltonstall, CEO of the National Organization for Rare Disorders (NORD), which bestows Rare Impact Awards every year.

This year’s virtual event last week honored 15 people, including Jade Day, a member of the Cherokee Nation, who founded a rare disease advocacy group for arterial tortuosity syndrome. Her son was diagnosed with the rare disease as a baby. She said she felt alone and lost in the healthcare system, “so I became an advocate.”

Dr. Chris Austin also received a Rare Impact Award. He worked for a decade as the director of the U.S. National Center for Advancing Translational Sciences. The position gave him purview over rare diseases – an area that is poised for even more progress, he said.

“We’re beginning to change the narrative on rare diseases, that they’re a major public health problem deserving of attention, and, yes, funding,” Austin said.

NORD honored several legislators, including Hannah Kane of Massachusetts. She helped pass a bill in that state to form a Rare Disease Advisory Council and said she gained an understanding for what rare disease patients face when her daughter was diagnoses with two chronic illnesses.

“I’m hopeful that no rare disease patient will ever feel alone or without hope for a brighter future,” Kane said.

Rob Long, executive director of Uplifting Athletes, also was honored by NORD. He credits the organization for welcoming him in 2016 before his own nonprofit was on its feet. He attended a NORD conference and met people who became important contacts and friends. As a former college football star, Long said he believes in “individual excellence,” but finds even more hope in collaboration.

“We can create transformative change that will make the world a better place for all of us,” he said.

Daniela Delgado, a teen who started a nonprofit called Daniela’s Little Wish, received her Rare Impact award for a sweet reason: She bakes and delivers specialty cakes to kids who have rare diseases. She knows what it’s like because she lives with the bleeding disorder, von Willebrand Syndrome.

She said she’s on a mission to advocate for inclusion and equity and to encourage rare disease patients to “live a life without letting an illness or disability define who they are as a person.”