The ELPFDD-Externally Led Patient-Focused Drug Development Meeting
We partnered with the National Kidney Foundation to bring awareness about the burdens patients face while on their IgAN journey. Over 180 patients, academia, and industry members attended the event. The goal was to express our desperate need for better treatments for IgAN while also addressing the need to accelerate the pathways to bring them to market. This was a global effort and we had over 300 virtual attendees from all over the world. For many this was the first time they ever met another person with IgA Nephropathy
When you get a group of people with a common goal aka real treatment and cure for IgA Nephropathy – we create a SPARK. No one should face IgAN alone.
What is SPARK? SPARK is a 1-day symposium hosted by The IgA Nephropathy Foundation for IgA Nephropathy patients and their caregivers to learn about the disease, living with the disease and being a caregiver for those with the disease. It promises to be an information packed event with plenty of time for mingling with others and sharing your stories.
Registration is $150/per Hotel Room. Early Bird Registration is $75 [by April 15th]. Registration is per Hotel Room. All guests attending the conference must be registered
Sunday, July 24th Cocktail Reception + Dinner
Monday, July 25th Breakfast, Lunch, Snacks and IgAN Community Celebration Dinner at Wildhorse Saloon
Sunday, July 24, 2022 at 6:00 PM EDT
Monday, July 25, 2022 at 5:00 PM EDT
Sonesta Nashville Airport Hotel 600 Marriott Drive Nashville, TN 37214
email@example.com | firstname.lastname@example.org | 609-915-0371
4:00 – 6:00pm
Pre – Check-In
6:00 – 10:00pm
WELCOME RECEPTION / Check-In
Advocacy + IGAN Patient Ambassador Program Review
7:30 – 8:30am
BREAKFAST / Check-In
8:30 – 8:45am
OPENING REMARKS w/ Bonnie Schneider (IgAN Foundation)
8:45 – 10am
KEYNOTE SPEAKER: Adam Markel
10:05 – 10:50am
ABC OF IGAN w/ Dr. Jonathan Barratt
10:50 – 11am
11:05 – 11:50am
UNDERSTANDING YOUR LABS w/ Dr. Dana Rizk
11:50am – 12:30pm
PATIENT PANEL I moderated by Gisela Delgado (IgAN Foundation)
12:30 – 1:30pm
Afternoon includes (3) Breakout Sessions. Sessions will be recorded and made available to all Spark attendees.
1:35 – 2:20pm
CARE PARTNER PANEL w/ Alena Riddick (IgAN Foundation)
1:35 – 2:20pm
COVID + IGAN w/ Dr. Bruce Julian
2:25 – 3:10pm
HOW TO FIND YOUR KIDNEY DONOR w/ Harvey Mysel, Founder – Living Kidney Donors Network (LKDN)
2:25 – 3:10pm
KIDNEY BIOPSY EXPLAINED w/ Dr. with Jared Hassler
3:15 – 4:00pm
DEMYSTIFYING CLINICAL TRIALS w/ Dr. Rizik
3:15 – 4:00pm
FINDING A BALANCE : NUTRITION + IGAN w/ Lauren Levy (MS, RDN, LD, CSR) + Anthony Valentine (Founder, Cukebook.org (Culinary Nutrition for Kidneys, Inc.)
4:00 – 4:10pm
4:15 – 5:00pm
PATIENT PANEL II moderated by Gisela Delgado (IgAN Foundation)
5:00 – 5:15pm
CLOSING REMARKS w/ Bonnie Schneider (IgAN Foundation)
6:30 – 10pm
AFTERPARTY AT THE WILDHORSE (TRANSPORTATION PROVIDED)
***This agenda is subject to change. Final details will be shared with all registrants.
You are not alone in your diagnosis of IgA Nephropathy. SPARK is the only conference dedicated to the IgA Nephropathy community hosted by The IgA Nephropathy Foundation for IgA Nephropathy patients and their families to learn about the disease, living with the disease and being a caregiver for those with the disease.
Registration is $150/per room [double occupancy] Each additional guest past double occupancy is an additional $25/per person for SPARK registration. Every guest must be registered to participate. All rooms have been negotiated based off double occupancy. If you are traveling alone it is the same price.
[STAYING IN SAME ROOM up to (2) nights MAX]
1 GUEST – $150
2 GUESTS – $150
3 GUESTS – $175
4 GUESTS – $200
All attendees are required to be fully vaccinated to attend SPARK 2022 in person.
*Individuals are defined as fully vaccinated fourteen (14) days after getting their final dose of a COVID19 vaccine.
Only those unvaccinated individuals who have been granted a reasonable accommodation for legally protected reasons will be able to attend the meeting in person. Additionally, in line with CDC guidelines, all attendees will be required to wear a mask throughout the duration of the event and when not actively eating or drinking.
Meeting attendees will receive additional communication closer to the event date clearly detailing requirements regarding COVID-19 diagnostic testing as well as requirements for completing daily health attestation while attending the event.
You are encouraged to attend as many as possible.
Medical exemptions/accommodations for the COVID-19 vaccine will be considered if the person provides a written certification by a licensed, treating medical provider, such as a physician (MD or DO), nurse practitioner (NP), or physician’s assistant (PA), affirming one of the following: 1. 2. 3. The applicable CDC contraindication for the COVID-19 vaccine, or The applicable contraindication found in the manufacturer’s package insert for the COVID-19 vaccine, or A statement that the physical condition of the person or medical circumstances relating to the person are such that immunization is not considered safe, indicating the specific nature and probable duration of the medical condition or circumstances that contraindicate immunization with the COVID-19 vaccine.
Yes! We want as many patients and patient families to attend SPARK. Please share your story and email us at email@example.com.