Rare Love supports families navigating rare conditions and NICU/PICU journeys — wrapping arms around the siblings often left behind, the caregivers running on empty, and the parents in hospital hallways who need to know they are not alone.
For every family sitting in a hospital hallway, wondering if anyone sees them — we do.
"Rare Love supports families navigating rare conditions and NICU/PICU journeys — wrapping arms around the siblings often left behind, the caregivers running on empty, and the parents in hospital hallways who need to know they are not alone."
Our vision is a world where no family faces a rare diagnosis or hospital crisis in isolation. We believe that when we care for the whole family — not just the patient — healing happens differently. We exist to fill the gap that medical teams cannot: the human, emotional, and practical support that holds families together when everything feels like it's falling apart.
The patient facing a rare condition carries a weight no child should bear alone. We surround them with love, dignity, and the reminder that their life is extraordinary and deeply valued.
When a child is hospitalized, siblings often fade into the background. We see them, celebrate them, and make sure they know they matter too.
Caregivers sacrifice endlessly. We wrap our arms around them with practical support, care bags, and the reminder that they deserve care too.
No parent should sit alone in a hospital corridor. We show up so families know they are seen, known, and not forgotten.
Rare Love was born from firsthand experience. Our founder, Amanda Muklebust, knows what it means to navigate a rare diagnosis, spend days in hospital hallways, and watch her other children long for normalcy. That lived experience is the heartbeat of everything we do.
We are a Tucson-based 501(c)(3) nonprofit organization, officially recognized by the IRS on March 12, 2026. We operate on the belief that families are stronger together — and that practical, compassionate support can change the course of someone's hardest days.
6890 E. Sunrise Dr., STE 120 PMB 140, Tucson, AZ 85750
IRS-recognized 501(c)(3) Public Charity · EIN: 41-4845037 · Effective March 12, 2026
Instagram: @my.rare.love · Facebook: OfficialRareLove
Founder & Executive Director
A mother, advocate, and rare disease family navigator who turned her family's experience into a mission.
Secretary / Director
Supporting Rare Love's operational foundation and ensuring the mission stays anchored in family.
Director
Bringing strategic guidance and community commitment to the Rare Love board.
Youth Ambassadors & Children's Book Authors
Co-authors of Rare Love's original children's book and the heart behind our sibling advocacy.
Every project is an act of love — designed to meet families exactly where they are.
Delivered heartfelt care bags to mothers in the NICU and PICU at TMC for Children this Mother's Day — so no mom spent the day feeling forgotten.
A community card-writing event hosted at Pantano Christian Church on April 26, 2026. Volunteers wrote messages of hope for families in hospital care.
Providing gift baskets and gift cards to siblings of NICU/PICU patients — because when a baby is sick, the whole family hurts.
A children's book authored by our Youth Ambassadors, written to help kids understand and process a sibling's rare condition with hope and courage.
Virtual community fundraiser partnership with Panda Express (code: 9014976). Dine and support Rare Love simultaneously.
Rare Love joined Global Genes' Global Advocacy Alliance to expand our reach and connect with the broader rare disease advocacy community nationwide.
Whether you're a family in need, a potential donor, a community partner, or just someone who wants to know more — we'd love to hear from you. No message is too small.
6890 E. Sunrise Dr., STE 120 PMB 140
Tucson, AZ 85750
41-4845037
We respond within 2–3 business days. You can also email us directly at Info@MyRareLove.org.
Every dollar you give wraps arms around a family in their hardest moment. Rare Love is a registered 501(c)(3) — your gift is fully tax-deductible.
The most powerful thing you can do is give monthly.
Recurring gifts — even $10 or $25 a month — allow us to plan ahead, show up consistently, and never turn a family away. Families in crisis do not run on a schedule. With monthly supporters behind us, neither do we.
Rare Love · EIN 41-4845037 · 501(c)(3) Public Charity · Donations are tax-deductible to the extent allowed by law.