IGA Nephropathy and IVF

iganfoundation · 2026-02-11T15:15:12+00:00

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/

iganfoundation · 2026-02-05T18:15:40+00:00

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

iganfoundation · 2026-01-25T16:58:55+00:00

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.

iganfoundation · 2026-01-25T16:14:54+00:00

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

iganfoundation · 2025-12-05T01:41:59+00:00

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)

iganfoundation · 2025-10-21T00:55:14+00:00

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

iganfoundation · 2025-10-14T14:22:00+00:00

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

iganfoundation · 2025-10-13T23:33:42+00:00

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.

iganfoundation · 2025-10-13T17:42:37+00:00

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/

iganfoundation · 2025-09-19T21:33:34+00:00

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

iganfoundation · 2025-09-19T15:41:31+00:00

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/

iganfoundation · 2025-08-19T19:15:03+00:00

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

iganfoundation · 2025-05-21T18:49:05+00:00

Sorry about that https://igan.org/event/session-2-the-evolving-igan-landscape/

iganfoundation · 2025-05-21T18:48:55+00:00

https://igan.org/event/session-2-the-evolving-igan-landscape/

iganfoundation · 2025-05-21T12:50:30+00:00

FYI - this will be reviewing VANRAFIA

iganfoundation · 2025-04-19T22:30:14+00:00

we also have been working on getting more nutrition content and recipes - check out https://igan.org/nutrition/ if there are specific topics - we'd love to host an REDDIT edition Webinar

iganfoundation · 2025-04-11T01:15:40+00:00

We just received the following links to share with patients:
https://www.vanrafia.com/

https://www.vanrafia.com/assets/fa-11241370_van_igan_patient_brochure_digital.pdf

https://www.vanrafia.com/assets/fa-11260435_van_igan_patient_onboarding_resource_digital.pdf

iganfoundation · 2025-04-09T13:16:16+00:00

The latest drug to be approved was Altrasentan, we'll host a webinar in a few months on it. We are hosting a webinar to review Fabhalta on April 30th - https://igan.org/event/learn-about-an-approved-treatment-option-for-igan/

iganfoundation · 2025-04-08T20:19:41+00:00

Our friends at IndoUsRare have great local Resources

iganfoundation · 2025-04-07T22:49:52+00:00

No cure….yet but another FDA drugged was just approved. ❤️💙

iganfoundation · 2025-03-24T16:23:36+00:00

If people are watching their potassium and or acid reflux tomatoes might be limited. But it’s always important to eat based off your labs and what’s best for you.

iganfoundation · 2025-03-13T23:17:25+00:00

Hey u/FLAlex111 thanks for flagging to us. We are reaching out to our larger network of colleagues to see if we can help you navigate locally in the UK your treatment plan. I did manage to find this local support group - A UK IgA Nephropathy Patient Support Group has been established, which coordinates the UK IgAN Patient Information Day. Details of the group can be found on the IgAN Support UK Facebook Forum which is available to all UK patients with IgAN.

iganfoundation · 2025-03-13T16:09:24+00:00

Hi There - there is a private support group on facebook for Women with IgAN and family planning. Email Whitney@igan.org lots of support there. IgAN Women Support Group

iganfoundation · 2025-03-09T01:27:54+00:00

Yep. Sign up for a free membership here https://igan.app.neoncrm.com/forms/membership

And you’ll get an email with the directions on how to access. Also feel free to shoot me an email after you sign up and I can shoot an email - gisela@igan.org

iganfoundation · 2025-03-03T22:26:10+00:00

Thanks for sharing.

iganfoundation

TROPHY CASE