Spring 2025 Patient and Family Newsletter

Our mission is to help insured people with life-changing diseases overcome the financial barriers preventing them from accessing treatment.

Message From the President and CEO

Dear friends,

Spring is here and with it comes new opportunities to support our patient community! At The Assistance Fund (TAF), we're proud to start our 16th year of providing financial assistance to people living with life-changing diseases. Already this year, we've expanded our impact by launching new programs to support people living with familial chylomicronemia syndrome (FCS), hypoparathyroidism, and narcolepsy, bringing our total offering to 97 disease programs.

We know the increased hold times over the past few months have been challenging and we are tremendously appreciative of your patience. Our dedicated team has been working around the clock to process and approve applications and reimbursement requests as quickly as possible. As a reminder, submitting your reimbursement requests throughout the year as opposed to in batches will result in the quickest processing time.

Be sure to read the updates below to learn more about TAF's assistance and resources. Whether you're new to the TAF family or have received assistance for years, there's helpful information about your disease program. From all of us at TAF, it's our privilege to be here for you.

Sincerely,

Danielle Vizcaino

President and CEO

TAF News and Updates

Ensuring You Receive the Treatment You Need

TAF's disease programs help with out-of-pocket expenses for all FDA-approved treatment for the disease named in the program. You can review your disease program's covered expenses and covered treatment anytime in your Patient Portal account and our Disease Program Hub.

TAF Assistance Lasts an Entire Calendar Year

TAF assistance lasts the entire calendar year (unless otherwise specified), and reenrollment for 2026 will take place in November and December. Update your contact information in your Patient Portal account to ensure you receive TAF communications.

Check Out TAF's Patient Resources

Looking for additional financial resources, aging resources, and more?

Whether you're a patient or a caregiver, TAF has dozens of resources for you and your loved ones.

Reminder: March 31 Deadline For 2024 Reimbursement Requests

Don't forget to submit your reimbursement requests!

If you received TAF assistance last year, all reimbursement requests for 2024 dates of service must be uploaded by 7 p.m. ET on March 31, 2025, or postmarked with that date.

As a reminder, the easiest way to submit reimbursement requests is through the Patient Portal.

All-staff Event Features Rare Disease Mom and Patient Advocate

At TAF's all-staff event this month, our team had the honor of hosting guest speaker Sarita Edwards, a rare disease mom, patient advocate, and CEO and President of the E.We Foundation. Sarita shared her deeply moving journey as the mother of a child diagnosed with Trisomy 18, a rare genetic disorder, offering a powerful reminder of why our work matters. Sarita's unwavering dedication to advocating for a fairer, more compassionate healthcare system for people living with life-changing diseases gave us a renewed sense of mission and purpose.

From 2013 until 2018, Helen was able to access her critical pulmonary hypertension treatment with the assistance of different charities and manufacturer assistance programs. But when the assistance ended in winter 2018, her pulmonologist delivered the difficult news: she would likely have to abandon her treatment for a different, less effective treatment. That’s when Helen got word that TAF had an open disease program.

“I got on right away; it was so pleasant,” Helen said. “Thank God I got connected to TAF.”

You are not alone. Last year, TAF assisted over 40,000 people living with life-changing diseases across all 50 states. But each of those numbers represents a unique person with a unique story.

If you are willing, click the link below to share your story. A TAF staff member will contact you to schedule a short phone call.

By sharing your story, you'll help us reach more people in need.

TAF Supports Rare Disease Patients at Rare Disease Week

The final week of February is Rare Disease Week, a time to raise awareness for the millions of Americans living with rare diseases.

We were honored to participate in events throughout the week in Washington, DC, meeting with advocates and TAF patients who are receiving assistance through our over 60 rare disease programs. And through our donation to the EveryLife Foundation's Rare Giving Program, TAF supported many rare disease advocates, enabling them to attend the week's events.

During Rare Disease Week, TAF’s Director of Patient Advocacy, Stephanie Marshall, was presented with the Rare Disease Diversity Coalition’s 2025 Patient Advocacy RISE Award! This award honors individuals who are Resilient, Impassioned, Strong, and Empowered in the rare disease and health equity communities—and Stephanie truly embodies all those qualities. Stephanie is a tireless advocate for patients, and she's spent her nearly five years at TAF ensuring patients and patient communities have the educational resources they need. Congratulations, Stephanie!

Maximize Your Impact and Save on Taxes with Smart Giving

Donor-advised funds (DAFs) simplify charitable giving, offering tax advantages and a more structured approach to philanthropy. They allow donors to contribute assets, receive an immediate tax education, and recommend grants to their favorite charities. DAFs are increasingly popular for people to support charities while benefiting from tax efficiencies and investment growth.

If you're 70 or older, you can also support The Assistance Fund through an IRA charitable rollover (sometimes referred to as a QCD). You can give any amount, up to $108,000, to TAF and other charities without having to pay income taxes on the money.

Healthy Recipe: Chocolate Overnight Oats

Ingredients

Yield: 4-6 servings

• 1 cup old-fashioned rolled oats
• 2 tablespoons chia seeds
• 3 Medjool dates, pitted, roughly chopped
• 2 tablespoons of maple syrup, plus more to serve
• 2 teaspoons vanilla extract
• 3 tablespoons unsweetened cocoa powder
• 2 ½ cups milk or non-dairy milk
• Mixed berries, to serve

Preparation

Step 1

In a quart jar or a large airtight container, mix the oats, chia seeds, dates, maple syrup, vanilla, cocoa powder, and milk. Stir well with a wooden spoon. If the cocoa powder does not dissolve straight away, leave it for a few minutes, then stir again.

Step 2

Seal the jar or container tightly and refrigerate overnight (at least 6 hours).

Step 3

To serve, stir well. Place into bowls and top with berries and, if you like, a small drizzle of maple syrup.

Tip: While not mandatory, the oats benefit from a little stir, about 1 to 2 hours after first being refrigerated. This allows for more even distribution of the chia seeds and prevents clumping.

Upcoming Disease Awareness Months