Being Rare Podcast

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Being Rare Podcast

Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Being Rare Podcast, Podcast, PO Box 6391, .

The Being Rare podcast, hosted by Sarita Edwards, examines how policy, clinical practice, innovation, and institutional decision-making shape the lived experience of being rare, whether as a patient, caregiver, clinician, advocate, or leader.

02/06/2026

⏰ The countdown is on! Only 23 Days Until LEAP Summit 2026!

Join advocates, clinicians, researchers, students, industry leaders, and families from around the world for the 2026 LEAP into Advocacy Summit, a global interdisciplinary learning experience focused on advancing rare disease advocacy, strengthening systems navigation, and bridging science with community-centered practice.

🌎 Global Participation
🤝 Multi-Sector Collaboration
🎤 Expert-Led Sessions
💻 Hybrid Experience
🎓 Continuing Education Opportunities

Whether you're a healthcare professional, researcher, advocate, caregiver, student, or community leader, LEAP offers a unique opportunity to learn, connect, and drive meaningful change for rare and medically complex communities.

Together, we LEAP forward!

🔗 Register today: https://theewefoundation.org/leapsummit

26/05/2026

Mental health support shouldn’t be a privilege, but for many families living with rare and medically complex conditions, access to care remains out of reach.

Too many face barriers like:
• Long waitlists
• Limited specialists
• Geographic isolation
• Financial challenges
• Stigma surrounding mental health

Families navigating complex medical journeys deserve mental health support that is accessible, informed, and compassionate. At E.WE Foundation, we believe in creating spaces, resources, and conversations that help close care gaps because mental health matters for every diagnosis, every caregiver, and every family.

https://theewefoundation.org/zebra

21/05/2026

Mental wellness starts with small actions that create meaningful impact. This month, we invite you to take a few simple steps to support mental health.

✔ Learn
Take time to better understand the emotional impact rare diseases can have on individuals, caregivers, siblings, and families.

✔ Share
Share resources, stories, and support. You never know who may need to hear that they are not alone.

✔ Start a conversation
Open conversations help break stigma and create safe spaces for honesty, vulnerability, and healing.

✔ Check on a caregiver
Behind appointments, medications, and advocacy work is often someone carrying exhaustion, fear, and emotional stress silently.

Sometimes the smallest gestures, —a text, a call, a simple “How are you really doing?”—can make a difference. Mental health matters at every stage of the journey.

https://theewefoundation.org/mentalhealth

12/05/2026

Living with a rare or medically complex diagnosis can impact the entire family emotionally, mentally, and physically. Too often, those struggles go unseen.

That’s why the E.WE Foundation created our Mental Health Resource Center.

Our Resource Center offers:
🟩 Coping strategies
🟩 Family-centered support
🟩 Training for professionals
🟩 Tools for resilience

Whether you’re a caregiver, parent, sibling, advocate, educator, or healthcare professional—support matters, and so does your mental well-being. You are not alone.

Visit https://theewefoundation.org/mentalhealth to learn more.

06/05/2026

Caregivers carry more than schedules and medications.

They carry:
• Fear
• Uncertainty
• Exhaustion
• Advocacy responsibilities

And often… they carry it silently.

If you’re a caregiver in the rare disease community—your mental health matters too. You deserve support, space to breathe, and care that includes you.

🟩 Take a moment today to check in with yourself.
🟩 Ask for help if you need it.
🟩 Know that you are not alone.

You are not just the support system.
You are a person who needs support, too.

Explore our efforts: https://theewefoundation.org/zebra

01/05/2026

Mental health matters in every diagnosis. For individuals and families living with rare or medically complex conditions, the emotional impact is real, and often invisible.

This May, for Mental Health Awareness Month, we’re raising awareness, sharing resources, and holding space for the rare disease community because support shouldn’t be limited by stigma, geography, or diagnosis.

At E.WE Foundation, we believe mental health affects:
Any Person. Any Diagnosis. Anywhere.

Learn more: https://theewefoundation.org/mentalhealth

30/04/2026

Registration is NOW OPEN!

Join us for the 2026 LEAP into Advocacy Summit—a hybrid event bringing together patients, caregivers, advocates, students, healthcare professionals, researchers, and partners to turn knowledge into real-world impact.

📅 June 25, 2026
📍 In-person at the University of Alabama in Huntsville + Virtual

This year’s theme: Transforming Knowledge and Innovation Into Real-World Impact

From advocacy and policy to research, storytelling, and community-driven solutions—this is where ideas move into action.

Register now: https://theewefoundation.org/register

This event is approved for 6 CEs.

18/04/2026

April is Child Abuse & Neglect Prevention Month. Child abuse and neglect are more common than many realize—but prevention starts with awareness. By strengthening families, increasing awareness, and supporting early intervention, we can create safer environments where every child can thrive.

Every child deserves to feel safe, seen, and supported.

Learn the signs. Share the message. Be part of prevention.
https://theewefoundation.org/abuseprevention/

26/03/2026

Save the Date! Our annual LEAP into Advocacy Summit is happening June 25 at the University of Alabama Huntsville and virtually!

This event is for patients, families, advocates, researchers, clinicians, physicians, legislators, and anyone else affected by or interested in rare, genetic, and medically complex conditions.

Join us in-person on June 24 for a networking meet and greet! Enjoy food, music, and conversation! Registration opens in April!

We hope to see you there!

Address

PO Box 6391

35813

Website

http://www.theewefoundation.org/podcast

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