Evidence for families who can't wait.
When a diagnosis leaves families with few options and a fragmented system, no one should face it alone. Healing Hope International connects patients, physicians, and data through observational clinical studies, and publishes every result openly.
Join the Healing Hope Community
A place for families, clinicians, researchers, and supporters to meet, learn, and shape the research that matters to them. Community members are HHI's supporting members.
- Invitations to community gatherings and research conversations
- Useful educational updates, in plain language
- Opportunities to suggest research priorities
- Specific volunteer projects you can take on
- Progress reports showing what the community has helped accomplish
A personal welcome: Natalie Hope, our Director of Patient Advocacy, personally greets every new member.
Joining takes a minute: your name, email, role, and interests. Community membership is separate from research enrollment, and we never ask for medical information here.
Start here. You don't have to figure this out alone.
Many families come to us after hearing "there's nothing more we can do." We can't recommend or provide treatment, but we can make sure you're connected, informed, and heard.
Healing Hope International does not provide medical advice, arrange treatment, or facilitate access to investigational therapies. Treatment decisions belong to you and your licensed physician.
- Join the community. Tell us your role and the topics you care about.
- Meet people who understand. Come to a community gathering and hear from other families and researchers.
- Learn how research works. Plain language guides on observational studies, clinical trials, and talking with your physician.
- Shape what we study next. Your experience helps set HHI's research priorities.
Bringing the pieces together
Families living with serious and underserved conditions often hold the most important information about emerging therapies, but it is scattered across clinics and countries. We bring it together, ethically and transparently.
Patients & families
Your experience, captured through validated patient reported outcomes, becomes evidence that can help the next family.
Physicians
Clinicians who treat these patients join observational studies and registries, with study support at no cost to them.
Open data
Studies are registered before enrollment, reviewed by an ethics committee, and every result is published, positive or negative.
Which best describes you?
Join the community
Tell us the topics you care about. Stay for connection, educational sessions, research updates, and chances to advise.
Join and choose your topics → Physician or investigatorSubmit a collaboration inquiry
Join research discussions, help develop registries, and contribute to studies of the therapies you see in practice.
Start an inquiry → Scientist, student, or volunteerApply for a project
Defined work, team support, and visible contributions to the mission.
See volunteer projects → Donor or foundationSupport a named program
Fund a specific study or give monthly, with clear progress reports and the next funding priority.
Ways to give → Biotech or organizational partnerReview partnership opportunities
Structured collaboration with clear responsibilities and deliverables.
Talk with us →Ambitious goals. Open results.
The people behind the mission
Dr. Jonatha Leicher
Board certified acute care nurse practitioner with over a decade in emergency, trauma, and critical care.
Tamara Tamas
Biochemist and regulatory professional with over 15 years of research experience.
Natalie Hope
Registered Clinical Counsellor guiding families through pediatric brain injury.
Study enrollment updates, in your inbox
Hear when observational studies open for enrollment, when results are published, and when new family education resources are available.
Observational studies that follow patients over time
We study how emerging therapies are experienced in the real world, and we publish everything we learn.
Research programs
PANS/PANDAS and Autism Registry
A long term observational registry, built around a new validated patient reported outcomes measure, following children and young adults aged 4 to 21.
HIE Outcomes Study
An observational study of children aged 6 to 12 with hypoxic ischemic encephalopathy, comparing outcomes for children receiving emerging cell therapies from their own physicians with children receiving standard care.
Long Term Outcomes Registry
Yearly follow up of every participant for at least five years to understand how outcomes last and to detect late safety concerns.
Patient and Family Education
Free plain language guides, webinars, and summaries of our findings, in English and Spanish.
You help set our research priorities
The conditions and questions our community cares about most shape which observational registries HHI develops next.
- Tell us what matters. Community members share the conditions and topics they care about when they join. No medical details needed.
- We review together. Each quarter we bring the most requested topics to a community research conversation.
- We publish the priorities. The resulting priority list and our next steps appear in our updates.
Our commitment to open science
Every result published
Positive, negative, or inconclusive, all results are published in peer reviewed open access journals.
Registered before enrollment
Every study is approved by an independent ethics committee and registered on ClinicalTrials.gov before any participant enrolls.
Independent oversight
An independent Research Review Committee approves our studies. Donors and companies have no role in design, results, or publication.
No early access
Results are released to everyone at the same time. No individual, donor, or company receives findings first.
Observational studies registry
| Study | ClinicalTrials.gov | Title | Status |
|---|
All listed studies are observational. Healing Hope International does not provide medical treatment or assign interventions. Participation in observational research does not provide access to therapy. All treatment decisions are made independently between patients and their licensed healthcare providers.
Choose a study to support
Every gift designated to a study is used for that study's research costs.
Gifts designated to a study fund observational research only: data collection and management, outcome measures, ethics review, analysis, and open access publication. Donations never pay for any participant's treatment or for any therapy. If a study exceeds its goal or cannot proceed, designated gifts will support similar Healing Hope International research. Our application for recognition of tax-exempt status under Section 501(c)(3) is pending; please consult your tax advisor about the deductibility of your gift.
Understanding expanded access
Expanded access, also called compassionate use, is a regulatory pathway that licensed physicians may consider for patients with serious or life threatening conditions when no comparable alternatives are available.
We provide general educational information so families can understand when these pathways may be discussed with their own healthcare providers.
Important clarification
Healing Hope International does not facilitate, coordinate, or assist with expanded access or compassionate use. All requests are initiated and managed exclusively by the patient's licensed physician and the therapy's sponsor.
Healing Hope International does not conduct or sponsor interventional clinical trials, direct treatment protocols, provide regulatory guidance, or prepare regulatory submissions.
Clinicians, scientists, and advocates
United by one goal: better evidence for patients and families.
Healing Hope International began in March 2025 as an idea of healing and hope, and was established as a Texas nonprofit corporation in October 2026.
Dr. Jonatha Leicher
Board certified Adult Gerontology Acute Care Nurse Practitioner with over a decade of experience in emergency, trauma, cardiovascular, and critical care. She holds a Doctor of Nursing Practice from the University of Arizona, with advanced training from Harvard, Stanford, and Mayo Clinic. Dr. Leicher leads our strategy, patient advocacy, ethical standards, and global partnerships.
Tamara Tamas
Tamara is a biochemist and regulatory professional with over 15 years of research experience, holding an MS in Biopharmaceutical Regulatory Affairs and a degree in Chemistry with a biochemistry focus. She specializes in cGMP cell therapy production and quality systems, and at Healing Hope International she guides the regulatory and ethical framework for our observational studies, including study design, ethics committee review, and regulatory documentation.
Natalie Hope
Natalie Hope is a Registered Clinical Counsellor and patient advocate who guides families through the complexities of pediatric brain injury. Her Master's degree in Clinical Counselling and trauma expertise, combined with her own experience as a mother navigating her son's recovery, bring professional insight and heartfelt empathy to the families we serve.
Launch an observational study with HHI
We work with qualified physicians and clinics to support observational studies and patient registries for emerging therapies, focused on real world outcomes and open publication of results, at no cost to participating physicians.
Physician friendly onboarding
A streamlined process designed for busy medical professionals.
Structured data collection
Robust frameworks for reliable, compliant data capture.
Ethics review & registration
Studies are IRB reviewed and registered before enrollment.
Ongoing study support
Continued guidance as studies progress.
Request an observational registry
If your patients are already pursuing a treatment pathway with you, such as FDA expanded access, the Texas Right to Try law, or the Texas investigational stem cell treatment law, you can ask HHI to consider an observational registry that follows their outcomes over time.
What HHI does
- Designs the observational registry and patient reported outcome measures
- Arranges independent ethics (IRB) review and ClinicalTrials.gov registration
- Manages consented data collection, analysis, and open publication
What HHI does not do: HHI does not facilitate, coordinate, or assist with obtaining any treatment, expanded access, or state pathway request. Those decisions and requests belong to the treating clinician, the patient, and the therapy sponsor. Registry participation never provides access to therapy. Please do not include patient names or identifiers.
Research moves faster when more people take part
Defined work, team support, visible impact
Scientists, students, and skilled volunteers can apply for a specific project. Choose the project when you join the community and we will follow up with the details and a first assignment.
Research data project
Help organize and quality check observational registry data, and prepare summaries for open publication.
Apply for this project →Plain language education project
Turn study results and research concepts into clear guides for families, in English and Spanish.
Apply for this project →Community coordination
Help welcome new members, organize community gatherings, and keep the monthly rhythm running.
Apply for this project →Biotechnology and organizational partners
Foundations, healthcare organizations, and companies can collaborate with clear responsibilities and deliverables. Donors and companies have no role in study design, results, or publication.
Review partnership opportunities →Contribute to research
Patients and families may be eligible to take part in our observational studies. Research enrollment is a separate, consented process run through each registered study.
See our studies →Make a difference
Your generosity funds observational research, educational resources, and patient advocacy.
Awareness
Supports patient outreach and awareness
Education
Funds advocacy and education work
Research
Supports our observational research registry
Your receipt: every gift is confirmed with an emailed receipt right away, and you can download your receipts at any time from your Givebutter donor portal.
Monthly giving: Even $10 a month adds up. Recurring gifts help us plan long term studies that follow patients for years.
Healing Hope International is a Texas nonprofit corporation, EIN 43-2287249. Our application for recognition of tax-exempt status under Section 501(c)(3) of the Internal Revenue Code is pending. Please consult your tax advisor about the deductibility of your gift.
You are not alone. Join us.
The Healing Hope Community connects patients, families, physicians, researchers, volunteers, and supporters who believe families facing serious conditions deserve open, trustworthy evidence. Joining is free, and community members are HHI's supporting members.
Natalie will welcome you
Natalie Hope, Registered Clinical Counsellor and our Director of Patient Advocacy, personally greets every new member and helps you find your place in the community.
What members receive
- Invitations to community gatherings and research conversations
- Useful educational updates, including the study enrollment newsletter
- Opportunities to suggest research priorities
- Specific volunteer projects
- Progress reports showing what the community has helped accomplish
Community membership is free and non-voting and does not include governance rights in Healing Hope International. It is separate from research enrollment, which is a consented process run through each registered study, and it does not provide access to any therapy. Please don't share personal medical information in this form.
Join our WhatsApp group
Connect with other families, clinicians, and supporters, and get community updates as they happen.
Join on WhatsAppThe group is for connection and updates. HHI does not give medical advice or arrange treatment; please talk with your physician about medical decisions.
Research for your condition
Choose a condition to see the newest studies that are recruiting, and expanded access programs listed as available, directly from ClinicalTrials.gov, the public registry run by the U.S. National Library of Medicine.
Bring this to your physician
These listings are for learning and conversation. Only you and your licensed physician can decide whether any study or pathway is right for you.
Learn about expanded access
The FDA explains how expanded access works, and the Reagan-Udall Foundation's Expanded Access Navigator lists company expanded access policies.
Shape what HHI studies next
Tell us which conditions matter to you. Community interest helps decide which observational registries HHI develops.
Join and share your topics →Listings come directly from ClinicalTrials.gov and are shown in English, newest updates first. HHI does not endorse, recommend, or rank any study, sponsor, or product, has no relationship with listed sponsors unless stated on our Studies page, and does not facilitate enrollment or expanded access. Treating clinicians whose patients are already pursuing a pathway can ask HHI about an observational registry.
Partner with HHI on real world evidence
We work with companies, foundations, and health organizations that want independent, transparent evidence about how emerging therapies perform in the real world.
Support an observational registry
Fund registry development, outcome measures, ethics review, analysis, and open access publication under a written research agreement.
Collaborate on study design input
Share scientific background and safety information so registries capture meaningful outcomes. Final design decisions rest with HHI and the ethics committee.
Support family education
Fund plain language, bilingual education about how research and regulatory pathways work, never about a specific product.
Our independence policy
Every partnership follows the same rules, so families, physicians, and the public can trust our results.
- Partners have no role in study design decisions, analysis, results, or publication.
- Every result is published, positive, negative, or inconclusive.
- No partner receives results before the public.
- HHI does not promote, advertise, or recommend any partner's product, and does not facilitate access to any therapy.
- All funding relationships are disclosed in our publications and on this site.
- Gifts and sponsorships never pay for any participant's treatment.
Expanded access policies are public
Companies developing therapies for serious conditions publish their expanded access policies. Rather than featuring any company, we point families and physicians to neutral directories that list them all.
Start a conversation
Use our collaboration inquiry and choose "Other" as your role. Tell us about your organization and the evidence questions you want answered.
Send a collaboration inquiryNews and progress
What the Healing Hope Community is building together. Follow us for updates as they happen.
Privacy notice
Healing Hope International ("HHI") respects your privacy. This notice explains what we collect through this website and how we use it.
What we collect
When you join the community, subscribe, or send an inquiry, we collect what you enter: your name, email address, role, interests, and for clinicians, professional details such as institution and credentials. We ask you not to share personal medical information or patient identifiers through this website, and our forms are not designed for it.
How we use it
We use your information to welcome you, send the updates you asked for, respond to inquiries, and understand which research topics our community cares about. We do not sell or rent your information, and we do not share it with research sponsors or partners.
Research is separate
Joining the community is not research enrollment. If you take part in an HHI observational study, you will receive a separate, ethics-committee-approved consent document that explains how study data are collected, protected, and used.
Service providers
Our website and forms run on Wix, and donations are processed by Givebutter, which sends your receipt. These providers handle information under their own privacy policies. Search results on our Find Research page are loaded directly from ClinicalTrials.gov.
Your choices
You can unsubscribe from emails at any time using the link in any message, and you can ask us to update or delete your information by contacting us through the collaboration inquiry form.
Last updated October 2026.
Accessibility statement
Healing Hope International wants everyone, including people with disabilities, to be able to use this website. We aim to meet the Web Content Accessibility Guidelines (WCAG) 2.1, level AA.
What we have done
- Keyboard navigation with visible focus, and a "Skip to main content" link
- Text and color contrast checked against WCAG AA
- A larger text option (A+) in the header
- Labels and error messages on every form field, announced to screen readers
- Respect for your device's reduced motion setting
- Spanish translation of our pages (Español in the header)
Known limitations
Study listings from ClinicalTrials.gov are shown in English. Some partner websites we link to may not meet the same standards.
Tell us
If anything on this site is hard to use, please tell us through the collaboration inquiry form and we will help and fix it.