What Raregivers does

Raregivers, Inc. is a 501(c)(3) nonprofit organization (EIN #83-2660329) headquartered in Orange, California, that provides emotional support to caregivers, patients, and families affected by rare, chronic, and complex diseases. Founded in 2019 under the legacy of the founder's prior work with Angel Aid, the organization operates against a backdrop of roughly 350 million people worldwide living with a rare disease, 10,000+ identified rare diseases, only 5% with available treatments, and approximately one-third of rare children not reaching their fifth birthday. Its core offering is the Raregivers Emotional Journey Map, a free, downloadable six-stage framework (Noticing Changes, Adjusting +/- Diagnosis, Shifting Responsibilities, Full Time Care, End of Life, Finding Meaning) developed through a meta-study of published research, proprietary data, and lived experience since 2019.

The organization's product surface combines this content asset with weekly virtual support groups (Women's Empowerment Circle on Tuesdays at 10:00 AM PST, A Man's Journey conversation series), on-demand wellness content (Soulful Stretch & Strengthen), quarterly in-person wellness retreats at Barrett Family Ranch, and the Raregivers Coalition and Raregivers100 recognition program. Distribution runs through Zoom sessions, a Mighty Networks-powered community app, YouTube channel, Instagram, Mailchimp newsletters, and a Squarespace-hosted website, with a beta Interactive Experience of the Emotional Journey Map under development. The team is small (8 employees) and led by Founder and CEO Cristol Barrett O'Loughlin, supported by a Mental Health Advisory Council, a Board of Directors, and contracted practitioners such as embodied mindfulness counselor Padma Gordon.

Revenue is generated through donations accepted via the Funraise platform (rare givers 2026 campaign), corporate sponsorships, and grants, with fundraising strategy currently being developed in partnership with CCS Fundraising and a newly hired Development Manager. Strategic partners include UCSF (academic collaboration and summit), Barrett Family Ranch (retreat venue), and a coalition of community resource partners (RareConnect, Global Genes, The Compassionate Friends, Association of Child Life Professionals, Project Sebastian). The organization operates as a global, volunteer-supported nonprofit with no disclosed financials and was awarded the Candid Seal Gold in 2025 for nonprofit transparency.

Name

Raregivers

Legal name

Raregivers, Inc.

Website

https://raregivers.global

Company type

Private

Founded year

2019

Operating status

Operating

Short description

Raregivers is a 501(c)(3) nonprofit that provides emotional support, peer community, and wellness programs to caregivers, patients, and families affected by rare, chronic, and complex diseases worldwide, anchored by its six-stage Emotional Journey Map framework.

Ownership category

akta.pro rank

Product category

Rare Disease Caregiver Support Services

NAICS

Individual and Family Services (6241), Services for the Elderly and Persons with Disabilities (624120), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Disability Services & Independent Living Support (BPAGACAG), Private Wellness & Retreat Experiences (Personalized Spa, Yoga, Healing) (THAJALAI), Volunteer & Companion Support Services (Hospice Volunteer Programs) (HSABAFAO)

Keywords

• Rare disease caregiver support
• Emotional wellness programs
• Peer support communities
• Nonprofit caregiver services
• Chronic illness advocacy

Headquarters

HQ city

Orange

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D

Revenue model

1. Donations and Fundraising: 501(c)(3) nonprofit organization (EIN #83-2660329) that relies on donations to sponsor Rare Mothers and Rare Fathers in weekly support groups and quarterly wellness retreats at Barrett Family Ranch. Accepts donations through Funraise platform.
2. Corporate Sponsorships and Grants: Development Manager role focuses on corporate grant funding, institutional fundraising, and donor relations programs. Fundraising plan developed with CCS Fundraising.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels7 records

Core offering

Raregivers is a 501(c)(3) nonprofit that provides structured emotional support and wellness services to caregivers and families affected by rare, chronic, and complex diseases. Its flagship offering is the free, downloadable Emotional Journey Map, a six-stage framework (Noticing Changes, Adjusting +/- Diagnosis, Shifting Responsibilities, Full Time Care, End of Life, Finding Meaning) developed from research, proprietary data, and lived experiences since 2019. The organization delivers weekly virtual support groups, on-demand wellness content, workshops, and quarterly in-person wellness retreats at Barrett Family Ranch, all offered free of charge and funded by donations and grants.

Product overview

Raregivers is a nonprofit organization offering emotional support and wellness services to families living with rare, chronic, and complex diseases. The organization operates as a community platform combining free downloadable resources with direct support services. Its core offerings include the Raregivers Emotional Journey Map (a six-stage emotional framework for caregivers), weekly virtual support groups (Women's Empowerment Circle, A Man's Journey), on-demand wellness content (Soulful Stretch & Strengthen), workshops and retreats at Barrett Family Ranch, the Raregivers Coalition for advocacy mobilization, and the Raregivers100 recognition program. Services are delivered through a Mighty Networks-powered community app and Zoom-based virtual sessions.

Differentiator

Problem solved

Functional benefit

Brands

• Raregivers100: A global tribute to 100 rare disease changemakers - individuals shaping the future of rare and chronic disease awareness, advocacy, and caregiving

Products and services

• Raregivers Emotional Journey Map Free, downloadable emotional mapping tool that defines the common emotional impact on medicalized lives across six stages (Noticing Changes, Adjusting +/- Diagnosis, Shifting Responsibilities, Full Time Care, End of Life, Finding Meaning) for caregivers, patients, families, and healthcare professionals.
• Weekly Support Groups Weekly virtual support gatherings including the Women's Empowerment Circle and A Man's Journey conversation series, focused on caregiver emotional support, mindful connection, and breaking stigma around men's mental health.
• Soulful Stretch & Strengthen On-demand wellness experience combining mindful movement, deep stretches, and bodyweight strength exercises designed for caregivers, available anytime and anywhere.
• Workshops, Retreats & Programs Educational workshops, quarterly wellness retreats at Barrett Family Ranch, and awareness programs supporting rare disease caregivers and families, with attendance sponsored by donations.
• Raregivers Coalition Coalition program connecting and mobilizing caregivers, advocates, and supporters to advance the mission of making caregiving visible, sustainable, and supported.
• Raregivers100 Global tribute recognizing 100 changemakers in rare and chronic disease advocacy across nonprofit leaders, healthcare professionals, artists, athletes, media leaders, musicians, and business/technology leaders.
• Raregivers Community App (Mighty Networks) Community mobile/web app powered by Mighty Networks that allows Raregivers members to connect, share content, welcome new members, and engage with the broader caregiver community.

Quantifiable outcome

• 350 million people worldwide affected by rare diseases represent the addressable market for caregiver support services
• +1 more outcomes

Named customers4 records

Segments3 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature2 records

Partnerships

Nine partnerships are on record, tiered minor, core and major.

• RareConnectminorOthersDisease-specific online community partner enabling rare families to meet, share stories, and learn from each other with translation services across languages.
• Global GenesminorOthersComprehensive rare disease organization that connects, empowers, and inspires the rare disease community through portal access, story sharing, and events.
• The Compassionate FriendsminorOthersOrganization providing support to parents after the passing of their child, supporting bereaved rare disease families.
• Association of Child Life ProfessionalsminorOthersOrganization representing trained professionals helping infants, children, youth, and families cope with stress and uncertainty of illness and treatment.
• Project SebastianminorOthersOrganization providing support, action, and awareness for families affected by rare diseases through group meetings and counseling.
• Barrett Family RanchcoreStrategic or Co-development PartnerPartner venue for quarterly wellness retreats for Raregivers community. Donations directly sponsor Rare Mothers and Rare Fathers at these retreats.
• UCSFmajorStrategic or Co-development PartnerCollaboration on rare disease summit and connection with healthcare professionals including Dr. Paul Harmatz at UCSF Benioff Children's Hospital.
• HeadspaceminorOthersRecommended mindfulness resource partner providing guided meditation app for sleep, stress, and anxiety support.
• CCS FundraisingcoreImplementation/ SI/ Consulting PartnerFundraising consulting partner helping develop organization's fundraising plan and strategy.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Global Genes: A leading rare-disease advocacy nonprofit that builds community, provides educational resources, and convenes the rare-disease ecosystem — directly comparable to Raregivers in mission (rare-disease community support) and donor-base overlap.
• RareConnect: An online rare-disease community platform (operated by EURORDIS) that connects patients and families across diseases with moderated peer-support groups and translation — directly overlapping Raregivers' virtual peer-support offering.
• Genetic Alliance: A nonprofit advocacy organization focused on individuals and families affected by genetic conditions, providing community engagement, policy advocacy, and resource infrastructure comparable to Raregivers' caregiver-support mission.
• The Compassionate Friends: A national nonprofit providing peer support to families after the death of a child — directly comparable to Raregivers' bereavement and End-of-Life stage programming for caregivers of terminally ill children.
• EveryLife Foundation for Rare Diseases: A rare-disease policy and advocacy nonprofit focused on accelerating biotech innovation and access to therapies; serves as a peer in the rare-disease nonprofit ecosystem that competes for similar foundation and pharma funding.
• Family Caregiver Alliance: A national nonprofit providing direct caregiver support, education, and policy advocacy across chronic and progressive conditions — directly comparable to Raregivers in caregiver-focused program design and audience.
• Project Sebastian: An active Raregivers community-resource partner that provides group meetings and counseling for families affected by rare diseases — a near-direct mission peer already operating in the same coalition.

Broad incumbents

• National Organization for Rare Disorders (NORD): The largest US umbrella advocacy organization for rare diseases, providing policy advocacy, patient resources, and disease-specific member programs. Functions as the broad incumbent that all rare-disease-focused nonprofits, including Raregivers, position against.
• National Alliance for Caregiving: A national caregiving advocacy coalition serving as an umbrella organization across caregiving populations; comparable as a broader incumbent in the caregiver-support space where Raregivers operates.
• CancerCare: A national nonprofit providing free professional support services including counseling, support groups, and education for people affected by cancer — directly comparable to Raregivers' emotional-support-and-education program model, but applied to oncology caregivers.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xyoutube.com/@raregivers
• YouTubeyoutube.com/@raregivers
• Instagraminstagram.com/reel/C3tQ6sxPV7w/?igsh=MzRlODBiNWFlZA%3D%3D&utm_source=ig_web_copy_link

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Raregivers