Livestream

Summit on Adrenal Insufficiency

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A Conference Designed to Inform, Equip, and Connect the Adrenal Insufficiency Community

Living with adrenal insufficiency—or caring for someone who does—requires knowledge, preparation, and a strong support network. This year’s conference is designed to bring together patients, families, caregivers, and medical professionals for a time of learning, encouragement, and connection.

Through a variety of planned sessions and breakout discussions, attendees will explore the latest medical advances, practical strategies for daily life, and ways to advocate for better care and understanding.

Learning from Experts

Several sessions will focus on the science and medical care of adrenal insufficiency, helping participants stay informed about current treatments and emerging therapies.

Topics include:

  • Cortisol Pump Health & Nutrition
  • Advances in Adrenal Insufficiency Therapy
  • Risk Factors for Acquired Adrenal Insufficiency
  • Adrenal Insufficiency & Fatigue
  • Menopause and Adrenal Insufficiency
  • Adrenal Insufficiency in Children

These presentations will provide valuable insights from experts who are working to improve treatment and quality of life for those affected by adrenal insufficiency.

Navigating Healthcare and Emergencies

Understanding how to interact with healthcare systems can be critical for people with adrenal insufficiency. Several sessions are designed to empower attendees with practical knowledge and confidence.

Participants will learn about:

  • Understanding EMS & ER Systems
  • Health Literacy
  • Self Advocacy
  • Tactical Planning for Adrenal Insufficiency

These sessions aim to give attendees tools to navigate medical settings, communicate effectively with healthcare providers, and prepare for emergencies.

Real-Life Perspectives

The conference will also feature sessions that focus on the lived experiences of those managing adrenal insufficiency every day.

Highlights include:

  • Adults with Adrenal Insufficiency – A Panel Discussion for Parents
  • Parent and Spouse Support
  • Service Dogs and Their Role in Support

These discussions provide a space to hear firsthand stories, share experiences, and learn from others who truly understand the challenges and successes of living with adrenal insufficiency.

Looking Ahead: Technology and Innovation

As technology continues to evolve, the conference will also explore how new tools may affect patient care and education. One session will examine the positives and potential concerns of using artificial intelligence as a tool, helping attendees better understand how AI might support healthcare decisions and information gathering.

Building Community

Beyond the sessions themselves, the conference is an opportunity to connect with others who share similar experiences, build lasting relationships, and strengthen the adrenal insufficiency community.

Whether you are newly diagnosed, a longtime patient, a parent, spouse, or healthcare professional, this conference offers valuable information and meaningful support.

Together, we can continue learning, advocating, and improving life for everyone affected by adrenal insufficiency.

DATES: April 23 – 25

Sunday the 26th is an optional family fun day

LOCATION: Minneapolis MN

VENUE: Double Tree by Hilton Minneapolis Airport

Inperson registration.

Livestream Registration

More about Adrenal Insufficiency United (AIU)

📞 Livestream the Rare Disease Congressional Caucus Briefing December 4th

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For those who can not make it to Washington, DC next week, we’re pleased to announce a livestream will be available for the Rare Disease Congressional Caucus briefing.

Rare Disease Legislative Advocates with honorary co-hosts Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN), Co-Chairs of the Rare Disease Congressional Caucus, invite you to a lunch briefing:

The Diagnostic Odyssey

Tuesday, December 4, 2018, from 12:00 p.m. until 1:00 p.m.

121 Cannon House Office Building

Complimentary lunch included

Registration available on-site

Register for the event livestream by clicking this link.

 

If you have questions about the briefing, please email Shannon von Felden, RDLA Program Manager, at svonfelden@everylifefoundation.org.

📅 In California? Support group meeting, Saturday Oct. 06, 2018

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If you are unable to attend in person, please join us on our Facebook Live Stream!

📅 Register for 2018 RARE Patient Advocacy Summit

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The RARE Patient Advocacy Summit is the can’t-miss event of the year for rare disease stakeholders. The Summit will take place October 3-4 at the Hotel Irvine in Irvine, California, and it is the largest gathering of rare disease patients, advocates and thought leaders worldwide.

Take advantage of this opportunity to connect and learn from more than 200 experts in rare disease leading 100 educational sessions. This year, the Summit offers four specialized learning tracks to help you spark change including:

  • Living with a life-altering condition, before and after diagnosis
  • Becoming successful architects of your health and that of your disease community
  • Building on advances as a patient, partner, and driver in drug development
  • Learning about the latest science and technology that drive innovation

The RARE Patient Advocacy Summit offers many unique opportunities to support the rare community by participating in the largest educational event for rare patients and advocates. Together, we are strong. Join Global Genes, partners and rare disease community members from all walks of life to become equipped with the tools needed to persevere and thrive on our paths forward!

Click here to register now:

 

Click here to view and download an up-to-date PDF of our full Summit Agenda. New speakers and sessions will be added each week, so be sure to check back before finalizing your Summit plans.

Each year, dozens of exhibitors in the rare disease space congregate at the Summit to provide patients with information, tools and resources to help them along their journey. If you’d like to register as an exhibitor, click here. Space is limited so be sure to register ASAP.

We’re so glad you are joining us at the Summit! We’ve put together a helpful list of places to stay, directions, and everything else out-of-towners need to know to plan their trip. Click here for a comprehensive Summit travel guide.

Can’t attend the Summit in person? Don’t worry, you can view the event on Livestream! Click here to register.