By Stephanie Stahl

PHILADELPHIA (CBS) — An international group of doctors and scientists will be in Philadelphia this weekend. They’re gathering for a conference on a rare disease.

Millions of families are anxiously waiting for advances and better treatments for this condition, including one in Montgomery County.

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“It can affect you in different ways,” 13-year-old Amaya Rottloff said.

Amaya is talking about the genetic disorder she has, neurofibromatosis, that led to brain surgery.

“It can affect your hearing, your sight, your walking ability,” she said.

Amaya and her family know all about what’s commonly called NF, which causes tumors to grow on nerve tissue.

“It’s had its ups and downs. It’s definitely hard on the family,” Amaya’s mom, Ursula Rottloff, said. “When she had surgery, it was during the lockdown so no one could visit.”

Amaya has recovered but her future, medically, is filled with unknowns.

“It would be nice to have some treatments that we know would minimize the side effects but also help, you know, give her a better quality of life,” Ron Rottloff, Amaya’s dad, said.

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Potential research developments will be the focus of the NF conference happening in Philadelphia.

“It’s a family reunion with scientists, clinicians and patients as well,” said Annette Bakker with the Children’s Tumor Foundation.

Bakker hopes to get more pharmaceutical companies involved in creating better drugs for NF.

“If we solve some of the issues in NF that can definitely help the larger cancer field,” she said.

For the Rottloff family, they’re hoping Amaya gets many more dances with dad.

“We just try to make the best out of every situation and every day that we have together because you never know what tomorrow’s gonna bring,” Amaya’s mom said.

Amaya is looking forward to eighth grade and has big plans for the future.

“I want to study criminology,” she said.

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The family is raising money for the Shine a Light on NF Walk happening in October.

Stephanie Stahl