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Rareatives •

A Mental Health Crisis is Looming for Rare Disease Caregivers. Give an Hour is Here to Help.

In the United States, three hundred and fifty people seek mental health care for every one licensed professional available to provide it. For rare disease caregivers – those supporting loved ones with conditions affecting fewer than 200,000 people – this gap represents an incredible challenge that compounds an already overwhelming burden. When they need mental health support the most, qualified providers remain scarce or, in some cases, nonexistent.
What Next •

Interview: Bridging Gaps in Cancer Pain Management with Cannabis Care – WHAT NEXT

In recent months, the debate over cannabis rescheduling has intensified as the Drug Enforcement Agency (DEA) shared its intent to reschedule cannabis from a Schedule I to a Schedule III drug. This recently came to a head on May 16, 2024 when the U.S. Department of Justice announced that the Attorney General submitted a notice of proposed rulemaking to begin the process towards rescheduling cannabis under the Controlled Substances Act (CSA).
Patient Worthy •

INTERVIEW: The Costs of Preventative Care

Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

The Cost of Preventative Care in Chronic Illness and Rare Disease—and Why We Need to Talk About It

There’s no way to sugarcoat this: living with a rare disease or chronic illness can be incredibly expensive.

On average, it takes anywhere from 4-8 years to receive a rare disease di
Patient Worthy •

INTERVIEW: Seahawks DE Discusses FPIES

Shelby Harris is no stranger to facing challenges; throughout his football career, Harris has remained as a strong and steady defensive lineman with a career 22.5 sacks as a pass rusher prior to joining the Seattle Seahawks in 2022 (since joining the Seahawks, Harris has registered 29 tackles, 13 assisted tackles, and 2 sacks). But one of his biggest challenges he faced off of the field: his son’s diagnosis of food protein-induced enterocolitis syndrome (FPIES).
Patient Worthy •

A Fulfilling Life with Late-Onset Tay-Sachs (LOTS) Pt. 1

48 years of marriage, 2 children, 2 nephews, 7 grandchildren, and 3 great-nieces. It is clear that Lorrie and Stewart Altman, over their time together, have created a beautiful life. When asked how they persevered in the face of challenges, Lorrie shares:

This outlook has not only helped the Altman family grow into what it is today, but has helped them learn about and cope with Stewart’s late-onset Tay-Sachs disease (LOTS) diagnosis.

I recently sat down with Lorrie and Stewart to discuss LOTS,
One Day Itinerary •

One Day in Reykjavik (Guide) - What to do in Reykjavik, Iceland

Reykjavik is the largest city in Iceland. The capital of the country, this southwestern city sits right on the water. The population of Reykjavik is just over 122,000 individuals but sees a large influx of tourists every year. Reykjavik is the northernmost capital in the world and the status of a cultural hub in which tourists can truly feel the Viking spirit. As a stop on the Ring Road, which can be driven on around the entire country, Reykjavik is a great place to spend an entire trip or a won
Patient Worthy •

Kenzi’s Commitment to Raising FCAS Awareness

Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

The world had come to a sudden, screeching halt.

At least that’s what it felt like to Makenzie (Kenzi) Cabrera when she and her husband Julious learned that their son Josiah had familial cold autoinflammatory syndrome (FCAS).

Josiah’s genetic variant was not in any database; to th
Photo by Karolina Grabowska on Pexels
Fair Shot For All •

4 Tips to Graduate Debt-Free

It is no secret that the student loan debt within the United States is out of control. There are 44 billion borrowers nationwide leading to about $1.26 trillion in debt.

In Massachusetts, 76% of graduates have student loan debt at an average of $30,000. Out of the 10 colleges where students have the most loan debt, five are located in this state.

Unfortunately, this type of debt is not unique to any one state. Student loan debt prevents students from entering into the economy and becoming more