E.WE EVENTS

The LEAP into Advocacy Virtual Summit brings together rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies to discuss the latest rare disease innovations, patient advocacy, public policy, and actionable strategies to accelerate change.

This year’s theme is Innovation and Collaboration: Charting the Path Forward for Rare Disease Advocacy

This event is approved for 2.5 CEUs.

Registration opens June 1, 2024.

The Health Equity Community Workshop is an organized event designed to educate, engage, and empower participants on the concept of health equity and its significance to rare diseases. Led by Vivian Duong, MPH Student, University of Pittsburg School of Public Health and E.WE Foundation 2023 Summer Intern, the workshop aims to increase awareness about health disparities, social determinants of health, and the factors that contribute to unequal access to healthcare and health outcomes among different populations.

This event will premiere on Monday, March 18, 2024, 1:00pm CST. This event is approved for 1 continuing education credit.

Registration opens March 1, 2024.

Join us for our annual LEAP into Advocacy Virtual Summit on June 29, 2023, 10am – 2:30pm CST.

The LEAP into Advocacy Virtual Summit brings together rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies to discuss the latest rare disease innovations, patient advocacy, and actionable strategies to accelerate change.

This event is approved for 4 social work continuing education credits.

Learn more at theewefoundation.org/leapsummit

Registration opens June 1st.

The E.WE Foundation is proud to partner with the Alabama Chapter of the National Association of Pediatric Nurse Practitioners for their 2023 Alabama NAPNAP Mini Conference. Participants can attend in person or virtually.

Join us on June 2, 2023 at the University of Alabama Huntsville, School of Nursing, Room 103A from 12:30pm to 5pm.

NAPNAP members and NP students $15

Non-members $30

This event is approved for nursing and social work continuing education credits. Nursing CEs: 4 hours, Social Work CEs: 4 hours

In partnership with Madison City Schools, the E.WE Foundation is proud to sponsor an upcoming Youth Mental Health First Aid Training Class. Learners will complete a 2-hour self-paced online pre-work section, followed by the instructor-led training on May 11 from 8:00-12:30 at Madison City Schools Central Office. Both portions must be successfully completed as part of the YMHFA certification process. Madison City School families can register below. Learn more about the E.WE Foundation Mental Health initiatives at https://buff.ly/41oqUVV.

*This is an exclusive training session for families in the Madison City School District, Madison, AL. Funding support provided by Madison Visionary Partners.

In honor of Trisomy Awareness Month, Sarita sits down with E.WE Foundation partners, Sonny Mullen with Help Hope Live and Dr. Deborah Bruns with the TRIS Project to talk about how their work can support Trisomy families. Watch the exclusive Trisomy Awareness Month live recording or listen in on our Being Rare Podcast! *Premieres March 28th!

A raw conversation about race, health, and stigma! Being Rare Podcast host Sarita Edwards sits down with Stacey Brown, Georgene’ Glass, and Dionne Stalling to discuss navigating life with rare disease and as rare disease caregivers, while black. No topic is off limits! Watch the live recording!

Watch the live recording of Self Care: Prioritizing Yourself. Being Rare host Sarita Edwards is joined by Dr. Aditi Kantipuly, Michelle Fruhshien, and Jeffrey Benton to talk about how you can start your self care routine in as little as 7 minutes in the comfort of your home.

Dr. Aditi Kantipuly – author of The Zebra Alphabet, world’s first alphabet book for rare conditions spreading kindness one alphabet at a time and creator of #movefor7, a movement to encouraging folks to commit to 7 minutes of intentional movement and share the movements publicly on social media platforms.

Michelle Fruhshein – wife and rare mom, digital creator, Jordan Syndrome advocate, raising awareness one reel at a time, special educator

Coach Jeffrey Benton – National Academy of Sports Medicine Certified Personal Trainer and health enthusiast