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IgAN Compass
A monthly newsletter, guiding our community through the latest news, research, and patient resources. You are not alone.
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Volume 2026
Issue February
Black History Month
Live Webinar: ICAN Study 2.10
National Donor Day / Valentine's Day 2.14
Rare Disease Day 2.28
| | This Black History Month, we reflect on the ongoing need to address systemic inequities in kidney health. Black communities are disproportionately impacted by barriers to timely diagnosis, specialty care, and access to emerging treatments. Through advocacy, education, and policy engagement, the IgA Nephropathy Foundation works to advance equitable healthcare solutions—ensuring that all patients living with IgAN are seen, heard, and supported at every stage of their journey. | | |
“Representation in research isn’t just about inclusion. It’s about accuracy.
If people who look like me aren’t part of the data, the outcomes won’t fully reflect our reality.
Black patients deserve treatments that are tested, trusted, and effective for us. Not assumed to work.
When we participate in research, we’re not just helping ourselves. We’re helping future generations receive better care.” - IgAN Foundation Member
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IgAN Hope Patient Registry
Advancing Research. Empowering Patients. Finding a Cure.
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IgA Nephropathy looks different for everyone. That’s why patient-reported symptoms matter.
Through the IgAN Hope Patient Registry, shared experiences help fuel research, improve understanding, and move care forward.
Be Heard: Your Data. Your Voice. Your Hope. Your experience matters. Your participation makes a difference. Join us today to advance research and find a cure for IgAN!
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Your story matters.
Living with IgA Nephropathy looks different for everyone—but no one should face it alone. Whether you’re newly diagnosed or years into your journey, a patient, caregiver, young or old, in the U.S. or around the world, we want to hear from you.
By sharing your story, you help others feel seen, understood, and less alone. With your permission, we may feature your story on our social media channels and in our newsletter.
Let’s show the world what living with IgAN really looks like—together.
| | National Donor Day - February 14 | | |
Observed each year on February 14, National Donor Day is dedicated to raising awareness and education about the lifesaving impact of organ, eye, and tissue donation. Established in 1998 by the Saturn Corporation and the United Auto Workers, and supported by the U.S. Department of Health and Human Services, this day reminds us of the power of generosity and compassion.
By sharing the Donate Life message, we can each take small but meaningful steps to help save and heal lives. National Donor Day honors all forms of donation—organ, eye, tissue, blood, platelets, and marrow—and encourages communities to get involved through local events, social media, and donor registration.
This day is also a time to recognize those who have given and received the gift of life, those currently waiting for a lifesaving transplant, and those who passed away waiting because an organ was not donated in time. Their stories underscore why awareness and action matter—today and every day.
| | Here are some fun graphics to share for National Donor Day / Valentine's Day | | Rare Disease Day, February 28th | | |
On Rare Disease Day, we stand together as a community to raise awareness for IgA Nephropathy and the millions of people affected by rare diseases worldwide.
Living with IgAN—or caring for someone who does—comes with unique challenges, but you are not alone. Your story has the power to educate, inspire, and create change. We invite you to share your experience, spread awareness, and show your stripes today.
SOCIAL MEDIA KIT
Use our social media toolkit to amplify your voice and let the world know that the IgAN community is strong, resilient, and united.
Living with IgA Nephropathy means navigating the unknown, but I am not alone. Together, we stand with 300 million people worldwide on #RareDiseaseDay to raise awareness, push for research, and support one another. ❤️💙🦓
#YouAreNotAlone #IgANFoundation #ShowYourStripes
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Reminder: Talkspace is provided to all members for free.
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TalkSpace Free 1:1 Licensed Therapy
How to get started:
When claiming your FREE Talkspace
please select the following options:
Let us know who you are:
Employee [we know you are not an employee, but there is no membership option]
Organization Name/Keyword
iganfoundation
Talkspace is confidential and secure. We will never know who uses the service or for what purpose. If you have any questions about Talkspace, you can reach out to info@igan.org for more information.
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Week of February 1
Your backup plan for the days you just can’t
You know the one: The day is blah before it even starts, there's nothing to look forward to, and everything feels a bit pointless. Sure, no feeling lasts forever, but that doesn’t make it easier in the moment.
When a low mood hits, activate our “CAN’T” method:
Comfort: Find comfort in something — a cup of tea or time in bed.
Action: Take a small action that might make you feel better — make your bed, meditate..
Notice: How did that action make you feel? Any shifts in your mood?
Talk: Reach out to someone and tell them how you feel — isolating feels tempting but rarely helps.
And remember to keep it simple. Sometimes, the small things are big things.
Calm provides guided meditations, breathing exercises, sleep stories, and mindfulness tools to help ease stress, support better sleep, and encourage moments of calm throughout the day.
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Reminder: A premium Calm Membership is provided to all members for free.
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LIVE WEBINAR: ICAN Study
Tuesday, February 10, 2026
7:00 PM ET
Interested in learning more about a clinical research opportunity for IgAN?
Join the webinar to hear directly from the study team and ask questions. You can also check the website for more details ahead of time.
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July 24 - 26th | Registration Goes Live
Friday, February 13, 2026 12:00 PM ET
We’re excited to announce that SPARK 2026 registration is opening soon! As a valued member, you'll have access to exclusive PreSale Access, but you'll need to confirm your membership status first.
Don’t wait until the last minute—check your membership status today! The PresaleTickets will only be visible to members and you have to be logged in to purchase.
Why have we activated this feature? SPARK has successfully sold out every year. We want to ensure that members are able to get access to tickets first.
Remember there is no cost to become a member unless you upgrade to Champion level.
✅ Log into our member portal and follow the steps below to confirm your status.
| We want as many patients and patient families to attend SPARK. Financial Aid for SPARK is open to non US Residents on a case by case basis. All Applicants must be registered members of The IgA Nephropathy Foundation and have a Verification of Diagnosis Form on file. (1) One Grant Application per family. Please share your story and fill out the application HERE | | | | |
PATIENT SUPPORT GROUP
Monday, February 16, 2026
7:00 PM ET
Connect with other IgAN patients.
Join us every 3rd Monday of the month. Contact info@igan.org for more info
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CAREGIVER/CAREPARTNER SUPPORT GROUP
Tuesday, February 17, 2026
7:00 PM ET
Connect with other Caregivers and Care Partners. Join us and share your story.
Contact alena@igan.org for more info
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The APRICOT study is an open-label, single-arm, multicenter Phase III clinical trial designed to evaluate the efficacy, pharmacokinetics, safety, and tolerability of iptacopan in pediatric patients aged 2 to under 18 years with primary immunoglobulin A nephropathy (IgAN). | | |
You may qualify to participate in this study if you are:
- Age between 2 and under 18 years on Day 1
- Have been diagnosed with IgA nephropathy by kidney biopsy
- Have a urine protein creatinine ratio (UPCR) of ≥ 1 g/g
- stable dose of ACE inhibitor or ARB (maximally approved or tolerated) for at least 120 days before Day 1
- eGFR of >/= 30 mL/min/1.73 m2
- Willingness to use contraception
| | | | Considering a Clinical Trial but not sure what that entails? Check out our guide on navigating Clinical Trials and what to expect. Considering a Clinical Trial | | | | |
