EPPIK Study Now Enrolling Pediatric Alport Patients

Travere Therapeutics is now enrolling children with rare kidney diseases, including Alport syndrome, in the EPPIK study, a Phase 2 pediatric clinical trial.

This 108-week pediatric study is evaluating an investigational therapy, sparsentan, in patients with confirmed diagnosis of Alport syndrome (AS), Focal segmental glomerulosclerosis (FSGS), Minimal change disease (MCD), IgA nephropathy (IgAN), and IgA vasculitis (IgAV).

Travere’s investigational approach is to lower proteinuria levels with sparsentan and slow the loss of kidney function in children with these rare renal conditions.

Eligibility Criteria for Pediatric Alport Patients at the time of screening:

• Must be between the ages 2-17 
• Must have an estimated Glomerular Function Rate (eGFR) greater than or equal to 30
• Must have a urine protein to creatinine ratio greater than or equal to 1.0 g/g
• Not currently on dialysis or have received a kidney transplant 

This study is a European Union (EU) regulatory requirement to support approval submissions for IgAN and FSGS. Clinical study sites will be located in the US, UK, and various countries in the EU.

Note: The EPPIK Study is not designed to ultimately support an approval in MCD, IgAV, or Alport syndrome.

More information about the EPPIK Study, including study sites and a downloadable patient flyer, can be found on the ASF website and the EPPIK Study website.

Direct Connect: Coping with COVID Lifestyle Changes

Thursday, February 17, 2022

5pm Pacific / 6pm Mountain / 7pm Central / 8pm Eastern

Alport patients ages 18+ are encouraged to join members of ASF’s Emerging Leadership Council (ELC) and staff for a 60-minute informal conversation about changes to daily routines as a result of COVID.

We’ll discuss adjustments to health care, diet/exercise, academics, work settings, struggling to communicate with facial masks, and more.

Click here for free registration.

ELC Member, Joseph Lagas, shared with ASF a recent emergency room experience, worsened by the ongoing pandemic. Read an excerpt of Joseph’s experience below. You can view his full remarks at this link.

This was the first time I ever had to rush to the hospital due to my disease and it was terrifying. On top of this, due to the increasing number of COVID cases, my girlfriend was not allowed in the emergency room with me. I had to sit and wait for hours, all the while hearing the ER doctor repeatedly exclaim, “We need to get Mr. Lagas a bed NOW!”

I believe talking through these experiences and learning from one another in our upcoming Direct Connect event will help us all adapt to these difficult new challenges as chronic kidney disease patients. On behalf of the Emerging Leadership Council, I hope you will join us.

EAGLE Study Update

On January 21st, Reata Pharmaceuticals provided a written statement to ASF and the larger community of Alport syndrome patients and families regarding the EAGLE Study.

Per their statement, “EAGLE, the open label extension of bardoxolone for patients who completed CARDINAL, will continue.”

The full statement can be read at this link.

Increased Accessibility for ASF Resources

The ASF website has been updated with 7 new language translation options: Croatian, Dutch, Filipino, Hindi, Polish, Urdu, and Zulu.

These language choices were selected based on community request and a review of Google Analytics. Google’s software allows us to see which countries have users who most frequently visit our website.

All eighteen current language options can be accessed by clicking on the flag icon on top of our website homepage.

Additionally, the recently released Patient Guide is now available to download in Spanish. Además, la Guía del paciente recientemente publicada ahora está disponible para descargar en español.

Let’s Chat: Effectively Communicating Alport Needs with Doctors, Employers, Schools

Alport patients of all ages have unique needs and it’s critical to learn how to best convey them to health care providers, employers/colleagues, and in educational settings.

Join us to both share your experiences and to hear fellow patients discuss how they have successfully overcome obstacles to communication about their Alport needs in a variety of situations.

Monday, February 28, 2022

5pm Pacific / 6pm Mountain / 7pm Central / 8pm Eastern

Click here to register for this free, 60-minute informal discussion.

Rare Disease Day occurs annually on the last day of February with the goal of raising awareness about rare diseases, such as Alport syndrome, and their impact on patients’ lives. This is a great day to get together and discuss our shared patient experiences.