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SEISMIC

July 17-19, 2025
Reykjavik, Iceland

A CROSS-STAKEHOLDER SUMMIT

addreSsing accEss Issues in diagnoSis and treatMent of C3G nephropathy and IC-MPGN

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ABOUT THE MEETING

Background

From the 1940s through today, the way we treat end-stage kidney disease has remained the same: dialysis and transplant. However, over the last five years, clinical trials and upstream treatments targeting some of the most complex and elusive rare kidney disease have surged tenfold. Multiple C3G and IC-MPGN therapies are in late-stage pipeline or under consideration for approval by the U.S. Food & Drug Administration (FDA) and European Medicines Agency (EMA). These therapies could significantly reduce the burden of illness, modify disease progression, and prevent the need for dialysis and transplant. However, treatments are at risk of not reaching patients due to complex diagnosis, lack of specialists, and regulatory hurdles.

The Event

This invitation-only summit will proactively convene stakeholders to explore the current clinical landscape, define the most urgent challenges, and recommend actionable steps that will help ensure and accelerate access to treatment and continued drug development progress.

Attendees are expected to include 50 to 75 clinicians, pathologists, researchers, professional societies, patient advocacy organization representatives, biopharmaceutical drug developers, and government researchers and regulators.

Expected Outcomes

Summit outputs being explored include a consensus publication and the formation of working groups in key areas of impact such as diagnosis protocol, access to expert care, access to approved therapies, and regulatory barriers.

 

SEISMIC was made possible thanks in part to generous support from an anonymous donor, Apellis Pharmaceuticals, Novartis and Sobi. Sponsorship does not influence program content or project outcomes.

AGENDA

Thursday July 17th, 7 pm GMT: Kickoff dinner
Friday, July 18th: Meeting 9 am – 5 pm GMT
Saturday, July 19th: Meeting 9 am – 1 pm GMT

FRIDAY JULY 18 (Day One)

7:30-9:00

Breakfast Available

9:00-10:30

Welcome, Housekeeping & Opening Remarks

Preparing the Healthcare Ecosystem for the Use of Complement Inhibition in C3G and IC-MPGN (Co-Chair Carla Nester)

  • Nomenclature of C3G/IC-MPGN (Co-Chair Marina Vivarelli)
  • Underlying pathomechanism of C3G/IC-MPGN
  • Epidemiology of C3G/IC-MPGN

10:30-11:00

Patient Journey Map

Marianne Silkjaer Nielsen and Lindsey Fuller

11:00-11:15

Break

11:15-13:00

Optimizing Diagnosis: Biopsy and “Beyond the Biopsy”

  • Results from the patient survey
  • Results from the physician survey
  • Discussion

13:00–14:00

Lunch

14:00-16:00

Highlighting Challenges in Treatment Approach

  • Results from the patient survey
  • Results from the physician survey
  • Discussion

16:00-16:30

Break

16:30-17:30

Monitoring Patients for Safety and Efficacy

  • Results from the patient survey
  • Results from the physician survey
  • Discussion

17:30

Day one concludes, dinner on your own

SATURDAY JULY 19 (Day Two)

7:30-9:00

Breakfast Available

9:00-11:00

Advancing Consensus on Access Issues, Post-Approval Surveillance Challenges & Solutions

  • Talk by a regulator/health care provider
  • Panel – Regulators and Providers to discuss challenges and potential solutions regarding access
  • Take home-messages and future perspectives in diagnostic optimization
  • Take-home messages and future perspectives in management approach
  • Take-home messages and future perspectives in patient monitoring

11:00-11:30

Break, hotel checkout

11:30-12:30

Closing

  • Generating evidence: what are the questions?
  • Wrap up and future directions: timeline, plans to collaborate with different platforms moving forward, all relevant stakeholders

GROUP PHOTO

12:30

Day two concludes, lunch, departures

ABOUT THE ORGANIZERS

This summit is organized collaboratively by a coalition of nonprofit organizations serving glomerular disease patients and nephrologists. We welcome collaboration from other interested entities.

ISGD logo 400x400
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HOSTInternational Society of Glomerular Disease

ISGD is a global professional society building the future of glomerular medicine by bringing together clinicians, researchers, and other experts to advance research; support the development of specialists and centers of excellence; and enable access to timely and suitable treatments.

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NephCure logo
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HOSTNephCure

NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care.

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CompCure logo
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HOSTCompCure

CompCure brings together patients/caregivers, clinicians, leading multidisciplinary experts, industry partners, and other relevant stakeholders with a shared commitment to improving outcome in C3G and IC-MPGN.

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Carla Nester
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MEETING CHAIRCarla Nester, MD
University of Iowa (US)
Professor of Pediatrics and Internal Medicine; Jean E. Robillard Chair in Pediatric Nephrology; Division Director & Fellowship Director, Division of Nephrology, Dialysis and Transplantation; Director, Pediatric Glomerular Disease Clinic

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Marina Vivarelli
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MEETING CHAIRMarina Vivarelli, MD
Ospedale Pediatrico Bambino Gesù (Italy)
Chief, Laboratory of Nephrology; Chief, Clinical Trial Center

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Lindsey Fuller
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PATIENT ADVISORY LEADLindsey Fuller
Lindsey Fuller is a C3GN patient and caregiver from Blue Mound, Illinois, USA. She volunteers for the National Kidney Foundation and NephCure as a C3G advocate, and is a co-leader for the C3G Warriors online patient support community.
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Marianne Silkjaer Nielsen
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PATIENT ADVISORY LEADMarianne Silkjaer Nielsen

Founder and Chair, CompCure

Mother of a girl with IC-MPGN, which led her to co-found CompCure to improve outcomes across complement-mediated kidney diseases. Professionally Marianne works as a strategy consultant with a focus on rare diseases. Marianne understands the issues associated with rare diseases from different angles,  as she also brings 20 years of experience from various senior leadership positions within the pharmaceutical and rare diagnostics industries. 

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Registration

Note: Registration has closed. If you received a personal invitation to attend but have not yet registered, please contact nephcureevents@nephcure.org for assistance.

Participant Information

LOCATION

Our meeting venue (in red) is within Reykjavik's central area, which is compact and pedestrian-friendly. 

From Keflavik International Airport, take the Flybus with a hotel drop-off to Bus Stop 12, Þórunnartún.

TRAVEL PLANNING

Academic / clinician / non-profit / patient attendees will be reimbursed for travel and accommodations up to USD $1,500 (please see "Reimbursements" below for details).

✈️ Flights:

Due to limited staff capacity, we would ask that you book your own flights/airport transfers. 

💺 We cannot reimburse first class airfares, but can reimburse the economy fare if you choose to pay the difference on your own. Business class requests will be evaluated on a case by case basis; please email events@nephcure.org for consideration.

Please note that if your travel dates are different from the conference dates, we can reimburse the lower amount of 1) the price of an itinerary arriving July 17 and departing July 19, or 2) your actual airfare. 

🚍 Flight transfers:

Please note that Reykjavik's Keflavik International Airport is about an hour's drive from downtown and taxi fare can run to hundreds of dollars/euro/pounds. The best airport transfer option is the Flybus coach. Buses meet all arriving flights at the airport and can be booked in advance here. Tickets are also available in the arrivals hall.

For Fosshotel and surrounding area: book your Flybus ticket with a hotel drop-off to Bus Stop 12, Þórunnartún.

🛂 Visa information

Iceland is part of the Schengen zone, so its requirements align with those of most EU countries. US, EU, Canadian, and UK citizens (among others) do not need a visa.

If unsure, please check visa requirements here.

ACCOMMODATIONS

🏨 Hotels:

If you plan to attend the summit, please book your accommodations soon, as July is the busy season in Reykjavik. To ensure the best prices per Icelandic procedures and provide a range of options, we have not booked a block of rooms but rather ask attendees to book their rooms individually.

Rooms are available at our venue Fosshotel Reykjavik itself (Address: Þórunnartún 1, 105 Reykjavík, Iceland), as well as many nearby hotels within a few minutes' walking distance or a short taxi ride. All of downtown Reykjavik is very pedestrian-friendly and safe, and even more so in the summer when it is light out all day and night.

WEATHER

☀️ Reykjavik forecast

🌤️ The average low temperature in July is 48° Fahrenheit (9° Celsius), and the average high temperature is 57° Fahrenheit (15° Celsius). It can be quite windy at times. We recommend packing warm layers, gloves/hat, and a raincoat in case of occasional rain showers. Wear comfortable shoes for cobblestone streets.

😎 Our meeting is not long after the summer solstice and Reykjavik will have 19+ hours of daylight! Even when the sun goes below the horizon, it will not be completely dark. You may wish to bring sunscreen, sunglasses, and a sleep mask.

👕 Meeting attire: Business casual

REIMBURSEMENTS

Academic / clinician / non-profit / patient attendees: We will reimburse eligible travel expenses (airfare, hotel, airport transfers and meals) up to a cap of USD $1,500. Expenses for reimbursements must be supported by receipts.

The travel reimbursement cap may be extended on a case-by-case basis for those traveling longer distances or experiencing other special circumstances.  Please contact nephcureevents@nephcure.org for consideration.

We cannot reimburse first class airfares, but can reimburse the economy fare if you choose to pay the difference on your own. Business class requests will be evaluated on a case by case basis; please email nephcureevents@nephcure.org for consideration.

Please download this form to itemize your expenses.

Upload the completed form, along with receipts for each item, here.