Raregivers

RELIEF FOR RAREGIVERS™ WHO NEED IT MOST

RAREGIVERS™

1. Those rare individuals who hold both hope and grief in the same human heart.

2. Caregivers, patients, family, friends, teachers, doctors, medical professionals, patient organizations, payers, biopharmaceutical employees, researchers, academics, advocates, gamers, entertainers, technologists and all others in the community giving their talents, time and life-force to further and honor chronically medicalized lives.

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RAREGIVERS™ RELIEF PROGRAMS

Self Care Tuesdays

Tuesdays at 10:00 AM PST
Join Padma Gordon, an embodied mindfulness counselor Tuesdays at 10 AM PT. This workshop will offer tools for creating and sustaining more loving relationships, navigating challenges, and working together as a team.

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Women's Empowerment Circle

Thursdays @ 10:00 AM PST
Join Pamela Russell on Thursdays at 10 am PT, every week for our Women’s Empowerment Circle Meet Up. Experience community through organic support with other Rare Mothers that might be in the same space as you. Come as you are. No preparation is required to join.

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A Man's Journey

Mondays @ 6:00 PM PST
Join Christopher Velona on Mondays @ 6:00 pm PST for our Men’s Monthly Meet Up. This group is here to help break the stigma around men’s mental health. Societal norms tell us that men do not need any emotional support at all.

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Raregivers Monthly Meetup

2nd Wednesday of Every Month @ 6:00 PM PST
Join Padma Gordon on the second Wednesday of every month, from 6 - 7:00 PM PT. Come to listen, come to participate, come to connect - just come as you are! The conversation will center upon the needs, desires, and situations as unique as the group gathered.

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"Being a medical parent is full of challenges. There are times you feel like you're helpless and hopeless. This community always picks me up when I need it most ."

-Megan L.
"I had to find my own way of getting stronger. I did it because my children needed me. I feel safe in a community knowing I'm not the only one."

-Phyllis R.
"This group gets me connected with people who really understand with no judgement. Sometimes I just need to hear it's going to be okay."

-Julie S.
"I enjoy connecting with other Rare Parents. It does a lot for my heart... having a safe space to share and understand where others are at to has helped light a path to growing and becoming stronger."

-Kelsey C.

RAREGIVER JOURNEY MAP

The mental health of patients, their caregivers, and the professionals supporting them is a drastically undocumented and unsupported reality in rare, chronic and complex disease communities. Since 2000, Raregivers™ has been leading a meta-study of published research, proprietary data and documented, lived experiences that clearly define the emotional impact on medicalized lives. Our Raregivers™ Emotional Journey Map is for you.

EXPLORE THE MAP

”The enormity of my life overwhelms my feelings. Something has got to give. This was the first step…to help me create space so I can receive help.”

— Sarah, Rare Mother

Thank you to our incredible raregiver families for helping shed a light on the rare disease community for "Rare Disease Week 2024”.

HONOR A RAREGIVER™

There are 350 million people worldwide living with a rare disease, more than AIDS and cancer combined. There are no cures for the 7000+ rare diseases and only 5% have treatments. One third of rare children will not see their 5th Birthday.

Raregivers provides emotional support to families living with rare, chronic and complex diseases. The reality of daily long-term caregiving is unimaginable.

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