"One of the problems patients face is they don't know what resources are out there," Gortze, 57, said. "Even their physicians might not know. Many times they're in over their head just trying to provide for their patients medically, that they don't have time to look for the other things that still provide quality of life, just maybe not in a medical sense."
That's where Rare New England steps in.
Gortze and her board of directors travel to conferences hosting rare disease experts and gather information not readily available to many. In just a few months, they've become Internet sleuths tracking down websites and online resources for the patients who come to them for help.
And, with those resources behind them, they offer free consulting to those who call or email in - including physicians - pointing them toward other non-profits and federal or state programs that can offer assistance.
"The challenges that patients face aren't always medical - sometimes they need emotional or financial support as well," Gortze said.
And these challenges vary from person to person, disease to disease, making resources hard to find, Gortze said.
Some diseases affect one body system, others multiple body systems. Symptoms can be conflicting and medical tests can add up, if there even are tests available for that disease. After all of that, treatments and cures are rare and research is scarce. And, many times patients face multiple misdiagnoses and can encounter delayed medical care, especially in emergency rooms, where doctors aren't readily equipped to respond appropriately to their symptoms.
Beyond medical care, children often struggle with educational plans and families face financial issues when parents are put out of work, Gortze said.
Her goal is to help them navigate those concerns on their own.
"I feel the more information they have, the more empowered they are to make the right decisions for themselves and for what they consider to be a good quality for life," Gortze said. "And it varies from patient to patient. There is no one right answer."
In addition to individual counseling, the organization hosts support groups to help patients find a community of their own - something Gortze found helpful when she started her own support group three years ago.
"I realized when I was diagnosed that I didn't know anyone else with that disease," she said. "There was nobody to talk to because nobody really understood what I was going through.
"So I started a support group, and about 20 people showed up for the first meeting. These were people who came from the same town, but didn't know each other, didn't know there was someone else facing what they did - and now they're each other's greatest support."
And, Rare New England hosts free events, bringing in experts on everything from physical therapy skills one can try to legislative efforts to provide more support for rare diseases.
In November, they'll host their first two-day conference on the importance of effective communication between patients and medical teams, touching upon how patients can ensure their concerns are heard when rare diseases are still largely unrecognized.
"We want patients and families to find the support they need to go forward," Gortze said. "That's our mission."
For more information: http://www.rarenewengland.org.
KAYLA CANNE can be reached at 508-236-0336, at email@example.com and on Twitter @SCNAttleboro