Today is Rare Disease Day, an annual observance to raise awareness about uncommon and often misdiagnosed medical disorders.

Support for families and loved ones of individuals with rare diseases is often limited simply because of their lack of familiarity. One such hereditary condition, known as Hereditary Hemorrhagic Telangiectasia or HHT, affects more than 600 Hoosiers, according to the Indiana Hemophilia and Thrombosis Center.

HHT can cause spontaneous and chronic nosebleeds, and only 20% are estimated to know they have it. Early detection is important, said Dr. Magdalena Lewandowska, a hematologist at the center.

"We confirm this with genetic testing," she said. "So, about 90% of patients who have HHT have a gene mutation. There's a 50% chance of inheriting it if one of your parents is affected with HHT."

She said common symptoms can include malformed blood vessels in the brain, lungs and liver, or pin-sized reddish-purple spots on a person's skin.

An additional barrier for patients with rare diseases is locating a specialist to treat them. The Undiagnosed Diseases Network Foundation defines an "ultra-rare" disease as one that affects one in 50,000 people.

Doctors face challenges in diagnosing HHT and other unique illnesses because a specific disease may not be verifiable, due to very little research about it in medical journals. Patients can be frustrated when the necessary tests are unavailable, or the disease mimics another disorder, leading to misdiagnosis.

In 2022, registered nurse Abby Terzini had symptoms of HHT. She said she was in denial - although three family members had the disease.

"I just started having more nosebleeds," Terzini said. "'It's just allergies' - or, 'It's just this, that or the other, it's not a big deal. I'm not having any big issues with this, so I don't need to go to the doctor.'"

Terzini said she eventually decided to get help from doctors who prescribe "bleed kits" containing medication to prevent or lessen the severity of a nosebleed. In 2024, it was reported that a drug used to treat bone marrow cancer and Kaposi sarcoma - a cancer that affects the blood vessels and lymphatic system - is showing promising results for HHT as well.

By Ramona Schindelheim for WorkingNation.
Broadcast version by Isobel Charle for Oregon News Service reporting for the WorkingNation-Public News Service Collaboration

From a translator helping a neighbor navigate health services or locate a food bank, a doula assisting a mother during childbirth, or a former inmate working with people exiting prison to reach healthier outcomes, community health workers have a wide range of roles.

They are frontline public health workers who usually live in the communities they serve and include volunteers. Research shows they have positive impacts by helping people access preventive care resulting in things like an increase in cancer screenings and reducing the risk of cardiovascular disease.

Community health workers (CHWs), also called promotores in Spanish-speaking communities, have existed for generations and have largely been under the radar. But their importance was thrust into the spotlight when COVID hit, sparking growing efforts to bring more structure to their workforce and ensure their jobs are sustainable.

Community Health Workers: Trusted Voices

"Because of the pandemic, there was the awareness that a lot of people didn't have trusted information. There are a lot of barriers for communities and accessing health care resources and getting trusted information, specifically looking at Black, Brown, Indigenous communities, immigrant, refugee communities," explains Jennine Smart, executive director, Oregon Community Health Workers Association.

"Being able to have a workforce that's already connected in community-based space to provide reliable, trusted, and honest information has been pivotal.

"It really amplified the recognition of this workforce and the value that CHWs bring more broadly to communities and really serving as a liaison and a bridge between health settings, health systems, and communities," adds Smart.

Those settings can include hospitals, clinics and community organizations. And CHWs are in demand.

The Bureau of Labor Statistics counts 63,400 CHWs in the United States, although that may be an undercount since there are different job titles for CHWs, especially in community health organizations.

It's estimated that jobs for CHWs will grow 13% between 2023 and 2033.

The median salary is $48,200, according to the BLS , with a high school diploma or equivalent required.

Empowering Through Technology

Among the latest efforts to create sustainable jobs for CHWs is the work of Pear Suite, a digital health company launched in 2021.

I spoke with the co-founder and CEO Colby Takeda at CES 2025 in January.

"Our company is all about empowering them, supporting them with technology, with software system that allows them to document all their activities, track the needs of individuals, track how they're getting support, whether it's through organizations or health care system or social services," says Takeda, who has personal experience with caregiver support as well as the nonprofit sector.

The company counts more than 175 partners in community-based organizations and health care companies and says it's had an impact on more than 100,000 lives.

Takeda explains the Pear Suite is providing accessible training in different languages to convert a community health worker's lived experience and help them with credentials and certifications since there is no standardization process across the country.

States have their own certification process and reimbursement process. Grants had funded much of this work, but 29 states now allow services by CHW to be reimbursed by Medicaid, according to a 2022 KFF survey.

Pear Suite, says Takeda, is helping CHWs utilize their technology to track their work. "It's really infrastructure for them to get more revenue, whether it's through reimbursement, through the new Medicaid or Medicare policies that allow for community health workers to now get paid or for them to secure more funding through grants with better data," stresses Takeda.

And it comes with hurdles.

"These organizations and these workers have been on paper and spreadsheets for many years. For them to transition to now a system for them to document and do claims and maintain compliance with health plans has been really challenging," he adds.

Takeda explains that the company provides wraparound support teams to better understand contracts with health plans and things like compliance and how to do claims.

The result, he says, is that community based organizations that can range from a small community center to a barbershop now have a formal structure.

"These are people that are providing screenings or resources to early young mothers to individuals who are facing homelessness or health sickness. These are organizations that have been doing this work for decades but never got paid by the health care system. We're now helping them get paid sometimes the average of $15,000 a month additional, which is huge for them," says Takeda.

Using Skills From Lived Experiences for a Living

One community health worker who credits Takeda's technology with helping his work become more sustainable is Joe Calderon, a former inmate who served 17 years in prison who has made it his mission to build better outcomes for people in his California community while supporting his family.

"Now I can change my life, my family's life, and my community's life, by slowly making a little bit more money by creating my own organization" says Calderon, a manager of recruiting and training for Urban Alchemy, based in San Francisco with a mission to "heal neighborhoods by employing the unique talents of returning citizens to transform communities and spaces."

Calderon has a Community Health Worker certificate from San Francisco City College and started out as a community health worker after exiting prison.

"I found my voice for advocacy as I watched so many men die in prison of treatable diseases," he explains. And he says it made him think more about health care when he had to take medicine for high blood pressure at the age of 29years old while behind bars. It's his lived experience that has spurred him to change outcomes of the communities he knows.

"No one ever taught me to go to the doctor. I already knew, when I started to see about health care, that the communities that I came from, in my perspective, took better care of our cars. Our cars had tinted windows, rims and beat. But nobody was talking about going to the dentist. Nobody was talking about going to the doctor regularly," adds Calderon.

Building a Sustainable Workforce

On a wider scale, Oregon, where a statewide professional workforce association for community health workers was established in 2011 and has an 80 training requirement for CHWs is aiming to take its new partnership with Pear Suite to a new level.

"We really want to support the sustainability of the workforce, right, and that we don't want to just get everybody trained as a CHW. We want to make sure that folks are able to be employed, and that we have a sustainable workforce," explains the Oregon Community Health Workers Association's Jennine Smart.

To do that, Smart explains, the organization is looking to use the platform to build a network that will take over the administrative burden of billing management while at the same time creating a system to get a more comprehensive view of the work done by community health workers.

"So we're looking at building a community based organization network. And so it'd be community based organizations that are employing community health workers and providing community health worker services. And then we'd hold a contract with Medicaid" explains Smart.

In short, it would provide structure not just for billing but case management. She describes the goal as building a more comprehensive payment system that hasn't always included all the work they do in an effort to recognize the key roles CHWs play.

She adds, "Those are the folks who are out there. They're getting their feet wet. They're in the dirt, they're really doing that connected hard work that is so meaningful."


Ramona Schindelheim wrote this article for WorkingNation.

Support for this reporting was provided by Lumina Foundation.


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The Missouri Foundation for Health is partnering with The Marshall Project on the launch of a St. Louis nonprofit newsroom highlighting the legal system's effect on health, especially in marginalized communities.

The Marshall Project focuses on investigative, data-driven journalism to explain the justice system, especially to those affected by it. With the foundation's support, its St. Louis newsroom will cover topics like the death penalty, juvenile justice, health care in prison conditions and reentry challenges.

Molly Crisp, senior communications strategist at the foundation, shared the goals of the new partnership.

"We recognize that the criminal justice system disproportionately harms certain populations and that exacerbates health inequities," Crisp explained. "We're hoping through this partnership that we're bringing to light some of the issues that are rampant in the legal system and that we can address those issues."

Statistics show low-income marginalized communities face higher pollution, increasing asthma risk, along with other health problems, and incarcerated individuals often endure long waits for medical care and face barriers to mental health treatment due to staff shortages and limited resources.

Katie Moore, a reporter for the Marshall Project, said its goal is to investigate such issues both locally and statewide.

"We have been talking with different groups, individuals who are connected to the criminal justice system in some way," Moore noted. "To see what their concerns are, what they see as being missing in the media landscape in St. Louis in terms of coverage of some of these more in-depth investigative issues."

With an increasing number of older people who are incarcerated, Missouri prisons face growing health care demands, including the need for geriatric care and hospice services.

Ohioans are seeing changes in their water infrastructure as cities work to replace lead service lines, a requirement under federal regulations.

But concerns have risen over the materials being used for replacements.

Teresa McGrath, chief research officer with the group Habitable, said while lead exposure poses significant health risks, she cautions against replacing these pipes with polyvinyl chloride due to its environmental and health implications.

"It's important to get those lead pipes out. Let's prioritize that," said McGrath. "But let's not make a regrettable substitution while we do that."

PVC production involves hazardous chemicals, including vinyl chloride, a known human carcinogen. However, PVC remains a popular choice because of its lower cost and ease of installation.

Environmental health advocate Yvette Jordan - the chair emeritus of the Newark Education Workers Caucus, and a steering committee member at Lead Free NJ - underscores the importance for Ohioans to be well informed about their environments.

"What is in their home?" said Jordan. "If they have a service line, is it plastic? Copper? What exactly is it and how does that affect their health, their community, and most importantly their families and children who are most affected by this?"

McGrath highlighted specific concerns about PVC and alternative materials that could be safer.

"The best available water pipe that we have evaluated for use inside a home is copper pipes," said McGrath, "and we will be the first ones to tell you that copper pipes are not perfect, but it is the best available."




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