U.R. Our Hope

What U.R. Our Hope does

U.R. Our Hope is a registered 501(c)(3) non-profit organization founded in 2008 and headquartered in Austin, Texas, that assists individuals and families on the journey to diagnosis for undiagnosed and rare disorders and helps them navigate the healthcare system after a rare diagnosis is received. The organization serves a fragmented population of families (primarily pediatric, with an explicit adult segment) where the average diagnostic odyssey lasts seven years and where 30-40% of children with special needs lack a definitive diagnosis. Its product surface is service-based rather than technology-based: family support (gas/meal cards, travel and lodging aid, hospitalization meals, burial assistance), curated referrals into elite research programs (NIH Undiagnosed Diseases Program, TGEN Center for Rare Childhood Disorders, Broad Institute Rare Genomes Project), discounted genetic testing via GeneDX, monthly in-person family meetings in the Austin area, a closed Yahoo virtual support group, a medical-flight resource aggregator covering eight air-ambulance nonprofits, legislative advocacy (notably co-authorship of HR 1591), and educational tools such as a Kids Self-Advocacy Presentation.

The organization is staffed by a 1-10 person team including co-founder and Medical Liaison Dr. Mary Elizabeth Parker (dual board-certified, clinical associate professor at Texas State University) and four directors covering Communication, Community Relations, Community Outreach, and Administration, supported by an Advisory Board. Revenue is generated entirely through donations and fundraising: individual donations via PayPal, an annual Evening of Hope Gala ($70 individual / $120 couple tickets, tiered corporate sponsorships), community restaurant and chili cook-off fundraisers, branded merchandise (adult shirts $20, youth shirts $15, accessories $8-$10), and corporate sponsorships. No services are charged to families; the gala and merchandise are the principal monetization mechanisms alongside donor cultivation. Distribution is community-led: monthly in-person meetings drive Central Texas engagement, the Yahoo group extends reach to families outside Texas, and word-of-mouth referrals from medical professionals and existing families drive intake across 10+ U.S. states and at least 5 countries.

Name

U.R. Our Hope

Legal name

U.R. Our Hope

Website

https://urourhope.org

Company type

Private

Founded year

2008

Operating status

Operating

Headcount range

1–10 employees

Short description

U.R. Our Hope is a 501(c)(3) nonprofit that assists families on the journey to diagnosis for undiagnosed and rare disorders by providing financial support, specialist and research-program referrals, community meetings, and advocacy across the U.S. and internationally.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy Services

NAICS

Other Individual and Family Services (624190), Social Assistance (624), Emergency and Other Relief Services (62423)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Rare disease advocacy
• Patient support services
• Diagnostic journey assistance
• Family assistance programs
• Nonprofit healthcare support

Headquarters

HQ city

Austin

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, Others

Revenue model

1. Individual Donations: Direct donations from individuals via PayPal and other channels, including tribute donations in honor of loved ones.
2. Event-Based Fundraising: Annual Evening of Hope Gala with ticket sales and silent auctions. Charity events including Pinthouse Pizza fundraisers, chili cook-offs, and community events.
3. Merchandise Sales: Sales of branded merchandise including t-shirts, cooling towels, headbands, and drawstring bags. Adult shirts $20, youth shirts $15.
4. Corporate Sponsorships: Sponsorship packages from local businesses for annual gala events, with various sponsorship tiers (Rare Sponsor, Undiagnosed Sponsor).

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

U.R. Our Hope is a registered 501(c)(3) non-profit that assists individuals and families on their journey to diagnosis and helps them navigate the healthcare system with a rare diagnosis. It delivers direct financial and logistical assistance (gas/meal cards, meals during hospitalization, travel and lodging support, burial assistance), connects families with super-specialists and national research programs, and provides education on genetic testing, monthly in-person meetings, an online support community, legislative advocacy, and a medical flights resource program.

Product overview

U.R. Our Hope is a registered 501(c)(3) non-profit organization that assists individuals and families on their journey to diagnosis or navigating healthcare with a rare diagnosis. Rather than a technology product company, U.R. Our Hope offers a coordinated suite of support services including direct family assistance (gas/meal cards, travel support, crisis meals, burial assistance), specialist and research program referrals (NIH Undiagnosed Diseases Program, TGEN Center for Rare Childhood Disorders, Broad Institute Rare Genomes Project), educational resources on genetic testing, monthly in-person family meetings, an online support community, legislative advocacy, and a medical flights resource program. The organization also provides educational tools like the Kids Self-Advocacy Presentation for young people to learn medical self-advocacy skills.

Differentiator

Problem solved

Functional benefit

Products and services

• Family Support Services
• Specialist and Research Program Referrals
• Education and Genetic Testing Resources
• Monthly Family Meetings
• Online Support Community
• Legislative Advocacy
• Medical Flights Resource Program
• Kids Self-Advocacy Presentation
• Branded Merchandise
• Evening of Hope Gala

Quantifiable outcome

• 5 families who searched 7+ years found diagnoses in one year
• +2 more outcomes

Named customers7 records

Segments3 records

Ideal customer profiles1 record

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Nine partnerships are on record, tiered core and minor.

• Broad Institute of MIT and Harvard - Rare Genomes ProjectcoreStrategic or Co-development Partner · 1 January 2018Partnership with the Rare Genomes Project at Broad Institute has led to new research study opportunities for families. Several families are currently undergoing testing to find a diagnosis. The program seeks to study whole genomes to discover underlying causes in ultra rare diseases. Medical liaison Mary Elizabeth visited the Broad Institute and spoke with program founders and researchers.
• Beyond the DiagnosiscoreStrategic or Co-development Partner · 1 January 2018Partnership to bring the Beyond the Diagnosis Art Exhibit to Texas. The exhibit connects art with medicine, featuring portraits of children living with rare diseases. U.R. Our Hope collaborated with Texas State University Department of Physical Therapy to host the exhibit, bringing families from across the US to view their child's portrait.
• TGEN Center for Rare Childhood DisorderscoreStrategic or Co-development PartnerTGen's Center for Rare Childhood Disorders applies genomic medicine tools to provide answers for parents seeking to identify disease causes in their children. Many U.R. Our Hope families have enrolled in clinical studies at TGEN. One family's diagnosis results were published in American Journal of Medical Genetics.
• NIH Undiagnosed Diseases ProgramcoreStrategic or Co-development PartnerNational Institutes of Health program that pursues diagnoses for patients with mysterious conditions. U.R. Our Hope helps families apply to this program which only sees about 200 cases annually. Many of organization's families have been seen at NIH.
• GeneDxcoreStrategic or Co-development PartnerGenetic testing company partnership enabling families to receive Whole Exome Sequencing at discounted rates. GeneDx worked with family insurance to obtain coverage and minimize out-of-pocket costs. Helps provide genetic testing not covered by insurance.
• Texas Physical Therapy Specialists (TPTS)minorGTM or Marketing PartnerPartnership with over 20 clinics throughout Central Texas to raise money and awareness. Each location features flyers, donation boxes, slideshows featuring patient stories, and infographics about undiagnosed and rare disorders.
• Healthcare Whisperer (Hari Khalsa)minorGTM or Marketing PartnerHealthcare advocacy company providing patient advocacy conference presentations and radio show appearances. Supports families through educational content about navigating healthcare system.
• Global GenesminorStrategic or Co-development PartnerOrganization provides Rare Toolkits including resources for Capitol Hill advocacy, becoming an empowered patient, and genetic testing guidance. U.R. Our Hope joins Global Genes Advocacy Leadership Group.
• Texas State University Department of Physical TherapycoreStrategic or Co-development PartnerPartnership for hosting Beyond the Diagnosis exhibit. Student volunteers help with events including annual Evening of Hope Gala. Medical liaison Dr. Parker is a clinical associate professor at Texas State.

Scale indicators9 records

Recent moves6 records

Expansion highlights4 records

Direct peers

• Beyond the Diagnosis: Art exhibit featuring portraits of children with rare diseases; existing U.R. Our Hope partner that aligns mission through awareness and family community building.
• Rare Genomics Institute: Nonprofit helping families access genomic sequencing and research opportunities; directly overlaps U.R. Our Hope's genetic testing education and research program referral services.
• SWAN USA (Syndromes Without A Name): National nonprofit supporting families of children with undiagnosed genetic conditions; most direct peer given overlapping mission around the pre-diagnosis journey and rare disease community building.
• Undiagnosed Diseases Network Foundation: Foundation supporting the NIH-affiliated Undiagnosed Diseases Network; highly comparable as both serve the same undiagnosed patient population and depend on NIH UDP referrals.

Emerging players

• CrowdMed: Crowdsourced medical diagnosis platform that U.R. Our Hope has historically partnered with to provide families another diagnostic pathway; comparable on outcome (faster diagnosis) but technology-led rather than community-led.
• TGen Center for Rare Childhood Disorders: Genomic medicine research center that U.R. Our Hope families enroll in; comparable on the diagnostic research axis though it operates as a research institution rather than a patient-services nonprofit.

Broad incumbents

• Global Genes: Global rare-disease advocacy organization that U.R. Our Hope already partners with through the Advocacy Leadership Group; provides toolkits (Capitol Hill, empowered patient) comparable to U.R. Our Hope's educational resources.
• National Organization for Rare Disorders (NORD): Largest U.S. rare-disease advocacy organization with research grants, patient registries, and policy influence; overlapping mission across all 7,000+ rare diseases but operates at significantly greater scale.
• Genetic Alliance: Nonprofit federation of advocacy organizations supporting genetics-related health conditions; comparable scope in genetic testing education and patient navigation, but at the network level rather than direct service.
• EveryLife Foundation for Rare Diseases: Policy-focused rare disease advocacy organization; comparable in legislative engagement (U.R. Our Hope co-authored HR 1591) but operates with a broader national policy platform.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/urourhope
• Facebookfacebook.com/urourhope
• Instagraminstagram.com/urourhope
• LinkedInlinkedin.com/company/u-r-our-hope

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about U.R. Our Hope