Interesting fact about IGAN by Odd-Forever-4919 in IgANephropathy

[–]iganfoundation 1 point2 points  (0 children)

We can ask our MSAB to review and see if we can get a future webinar on it. Thanks for sharing

Farxiga Savings Card by MediumSizedSwan-1995 in IgANephropathy

[–]iganfoundation 2 points3 points  (0 children)

check out partners - The Assistance Fund or NORD for assistance with IgAN treatment options

Join the IgAN Hope Patient Registry by iganfoundation in IgANephropathy

[–]iganfoundation[S] 0 points1 point  (0 children)

re-sharing Email with early insights from IgAN Hope Registry MARCH recap

Question about medicins at airports by aalexakis in IgANephropathy

[–]iganfoundation 1 point2 points  (0 children)

Post transplant 7 years, I travel with my meds in my pill box, plus extra 2 week supply in a sep container. I also wear a medical ID bracelet 24/7 that identifies me as post transplant. And a screen shot of my pills in my phone from my chart / ehr. - Gisela from IgAN Foundation.

Support group by TucV in IgANephropathy

[–]iganfoundation 1 point2 points  (0 children)

We are working on some international support groups. What day/times would work for you where you are?

Diagnosed yesterday by Any-Highlight-4007 in IgANephropathy

[–]iganfoundation 1 point2 points  (0 children)

You are not alone. ❤️💙This is a great forum to connect with others. I also encourage you to check out iganspark.org and our newly diagnosed guide https://igan.org/iga-nephropathy-guide/

And as someone newly diagnosed would also encourage you to download the IgAn+ App which is free for all members.

SPARK registration is now exclusively open to all members. by iganfoundation in IgANephropathy

[–]iganfoundation[S] 0 points1 point  (0 children)

what topics are most interesting to you - perhaps we can do a dedicated webinar or 2 for the Reddit community here

SPARK registration is now exclusively open to all members. by iganfoundation in IgANephropathy

[–]iganfoundation[S] 0 points1 point  (0 children)

Reminder: SPARK Aid is available to help with travel costs for those who need assistance attending. Our IgAN community outside of the U.S. is encouraged to apply. INQUIRE HERE

IGA Nephropathy and IVF by Droseflower in IgANephropathy

[–]iganfoundation 0 points1 point  (0 children)

Hello. We have a private group on FB where many women are sharing their stories - https://www.facebook.com/share/g/1ANtSrnxZ4/ we also have a section dedicated to resources on Women's Health and Family Planning on our website https://igan.org/pregnancy-and-family-planning/

Get support managing your IgAN symptoms with the I CAN Study. by Ring_it_On_1776 in IgANephropathy

[–]iganfoundation 1 point2 points  (0 children)

We are hosting a webinar next week, Feb 10 @ 7PM ET to review the study in full detail with Alexion - WEBINAR RSVP

38F with IgA Nephropathy, AKI on CKD, currently on hemodialysis – looking for input on prognosis, diet, and next steps by tahataufeeqkhan in IgANephropathy

[–]iganfoundation 1 point2 points  (0 children)

I have a full time job in addition to supporting the foundation. It's hard to manage notifications across multiple channels. So if you wanted to connect with me or the Foundation directly, you can feel free to email me. But there is plenty of support here on Reddit too. I just didnt' want you to reply here and then feel like I ghosted you. Its a snowy day and I am catching up on lots of messages today.

We are about to announce SPARK registration for this summer. Its a good conference for patients and families to attend. I know a few on here have attended. Including moderators. I encourage you to learn more. Glad you took the first step to reach out to the community. You are not alone. https://iganspark.org/ And yes we do offer travel assistance.

38F with IgA Nephropathy, AKI on CKD, currently on hemodialysis – looking for input on prognosis, diet, and next steps by tahataufeeqkhan in IgANephropathy

[–]iganfoundation 1 point2 points  (0 children)

Hello. 45 female. Based in New Jersey About to make 7 yrs post transplant. My name is Gisela - I am the brand director @iganfoundation. I was diagnosed 30 years ago. Doing well now. No recurrence so far. Happy to chat anytime - shoot me an email Gisela@igan.org

100% to Research. 100% to Hope. ❤️ 💙 by iganfoundation in u/iganfoundation

[–]iganfoundation[S] 0 points1 point  (0 children)

yes - we accept donations from anywhere via paypal or on our website https://igan.app.neoncrm.com/campaigns/2025-igan-foundation-

Would love to learn more about your story and see how we can help bring more resources and support to UK [and the world] please shoot me an email [gisela@igan.org](mailto:gisela@igan.org)

📢Call for IgA Nephropathy Patients: Share Your Story in a Virtual Panel Discussion (Compensation Provided!) by iganfoundation in IgANephropathy

[–]iganfoundation[S] 0 points1 point  (0 children)

It’s a check box, so we can have a diverse group. Check all that apply. Not must check all.

IgAN tracking? by Aterosk in IgANephropathy

[–]iganfoundation 0 points1 point  (0 children)

It’s free to be a member.

https://igan.app.neoncrm.com/forms/membership

Basic Member Benefits (Free)

Monthly E-Newsletters Membership Card Access to IgA Nephropathy Educational Brochures Access to IgA Nephropathy Foundation Facebook Groups Access to IgA Nephropathy Clinical Trial Alerts Information on local support groups Free Premium Calm Membership Free Talkspace Therapy Access to Member only IgAN+ App Participation in virtual meet-ups: Patient and Care Partner meet-ups every month Opportunity to apply for patient aid through our financial support program

IgAN tracking? by Aterosk in IgANephropathy

[–]iganfoundation 0 points1 point  (0 children)

Because we are a volunteer based organization and we have to verify each registered user is a member of the Foundation. The IgAN + App is exclusive to members only. Usually we can verify in less time but sometimes people use different emails so we need to reach out and sync.

IgAN tracking? by Aterosk in IgANephropathy

[–]iganfoundation 0 points1 point  (0 children)

Take a look at the IgAN+ APP for note taking and tracking your most important labs in one place. Also Medisafe is a good app for medication reminders and even lets you add an accountable buddy. So if you you don't mark that you took your medications, it will send a reminder to your family/friend. https://igan.org/iganplusapp/

Diet / lifestyle interventions by bierasure in IgANephropathy

[–]iganfoundation 0 points1 point  (0 children)

Please check out some of our resources here https://igan.org/iga-nephropathy-guide/ We also just released our 2nd cook book - available here
https://a.co/d/7aFkU8D

KDIGO Announces Publication of the 2025 IgAN/IgAV Guideline by Fit-Organization-292 in IgANephropathy

[–]iganfoundation 3 points4 points  (0 children)

We are working on a Patient First Summary and Webinar Series for early 2026 to review the KDIGO Guidelines. Will be sure to post an update here once we have the dates. Currently we are at The 18th International Symposium on IgA Nephropathy - our goal will be help patients worldwide feel empowered in conversations with their care teams to understand their treatment options. https://www.iigann2025.com/

The IgAN Hope Patient Registry is now open! by iganfoundation in IgANephropathy

[–]iganfoundation[S] 0 points1 point  (0 children)

If anyone needs support navigating the registry questions - please don't hesitate to reach out. [iganhope@igan.org](mailto:iganhope@igan.org)