Tuesday is Rare Disease Day, a day to raise awareness about the many uncommon illnesses that affect families across the country.
Some local doctors are hoping a new smartphone app can help some of the patients.
A dermatologist and one of his medical students have developed a new app for people with Sarcoidosis.
If it works for this disease, it could help many more people, especially people with rare diseases who are struggling to find help.
Mary Settles has sarcoidosis, a disease that causes abnormal inflammation and can strike multiple organs in the body.
For Settles, a small portion of her lung is affected, but mostly it's her skin. These days, it's under control.
But she at times in the past she had red, painful nodules on her nose for weeks.
Dr. Misha Rosenbach at Penn Medicine says sarcoidosis can also be deadly for other patients if it's found in the heart.
And there's still a lot of unanswered questions about the disease.
That's why Rosenbach and fourth year medical student Daniel O'Connor teamed with Apple to develop a smartphone app to help patients and to easily collect data.
"it just seems like really an a-ha moment, it was something like 'yes, why can't we do this,'" O'Connor said.
Patients can find up-to-date, understandable medical information, clinical trials, and they can be connected to resources.
"It uses the GPS of the smartphone to link them to local patient support groups and with local physicians who have been identified as experts or people comfortable with sarcoidosis," Rosenbach said.
Rosenbach says the secondary component is for research, connecting with hundreds of patients to learn more about the disease.
Settles says she feels fortunate her condition isn't life-threatening, but is hoping the app will lead to more research to help predict when she'll have a flare-up, and find better treatments for her and for others.
"I think it's fantastic. I think it's ingenious, to be able to collect data like that," Settles said.
The app was launched just a few weeks ago and already have 700 people signed up. It's free for patients.
And if the doctors can prove it works for this population, then they can prove it will be helpful for other diseases that are also lagging behind in research.
Penn Medicine doctor, student create app to help patients with rare disease
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