Rare Disease Patient Recruiting | RC Horowitz & Company

Who we recruit

Patients and the people who care for them.

Rare disease studies rarely want "anyone with the condition." They want a specific stage, a specific treatment history, a specific decision maker. We screen to that level of detail.

Diagnosed patients

Rare, orphan, and ultra-rare conditions; newly diagnosed and long-term patients; specific types, subtypes, and severity levels.

Treatment-specific audiences

Current, past, and lapsed users of a named therapy; infusion, injectable, and oral regimens; switchers, discontinuers, and treatment-naive patients.

Caregivers and families

Parents of pediatric patients, spouses and adult children, and the household decision maker who manages appointments, insurance, and treatment.

The specialists who treat them

Physicians, nurses, and care coordinators at specialty practices and centers, when your study needs the clinical side too.

About database counts

A count is not a patient.

Rare disease audiences change constantly. Patients progress, switch treatments, join trials, and some pass away. A panel count from any supplier can include people who no longer fit the study, or who are no longer with us, so a big number up front does not tell you much.

We do not sell you a count. We are flexible and nimble, and we put in the time: recruiting and networking person by person until we find the patients and caregivers who truly qualify today.

Clients tell us they value that honesty. When a study is low incidence or time-sensitive, we will not give you a feasibility number or a deadline we cannot stand behind.

We never over‑promise and under‑deliver.

How we find and verify them

Hard to find. Harder to fake.

Low incidence attracts people who will say anything to qualify. Our recruiters are trained to catch it.

Find

We go looking: recruiting and networking person by person, re-contacting past participants, and working client-provided lists under the project agreement, instead of relying on a count.

Found, not just counted.

Screen

Experienced healthcare recruiters ask follow-up questions a form cannot: dates, doses, doctors, how the diagnosis was made, and whether the answers hang together.

Verified, not just qualified.

Verify

Where the study allows: proof of diagnosis or treatment, duplicate and professional-respondent checks, and a re-screen at confirmation so nothing has changed by session day.

The right patient, confirmed twice.

Support

Flexible scheduling around treatment and fatigue, caregiver accommodations, tech checks for online sessions, and standbys ready in case a health issue gets in the way.

Show rates you can plan around.

Recent rare and low-incidence recruits

Hundreds of therapeutic areas. These are a few of the hardest.

A sample of the rare and low-incidence audiences our recruiters have found, verified, and seated, usually a mix of patients and caregivers. There are many others.

Rare and orphan diseases

AcromegalyAchondroplasiaAmyloidosisAngelman syndromeBeta thalassemiaEosinophilic esophagitisFragile X syndromeHemophilia A and BHypoparathyroidismIdiopathic pulmonary fibrosisLigneous conjunctivitisNeurofibromatosisRett syndromeSickle cell disease (SCD)Von Willebrand disease

Oncology, by type, stage, and line of therapy

Acute myeloid leukemia (AML)Advanced and metastatic basal cell carcinoma (BCC)Breast cancer (BC), including TNBC and BRCAColorectal cancer (CRC)Diffuse large B-cell lymphoma (DLBCL)Glioblastoma (GBM)Muscle-invasive bladder cancer (MIBC)Non-muscle-invasive bladder cancer (NMIBC)Non-Hodgkin lymphomaNon-small cell lung cancer (NSCLC)Small cell lung cancer (SCLC)Ovarian cancerProstate cancer (PC)Advanced metastatic cancers

Specialty and chronic conditions

HIVSevere hypertriglyceridemia (sHTG)Elevated Lp(a)HypercholesterolemiaMultiple sclerosis (RRMS and SPMS)NarcolepsyParkinson’s disease psychosisSchizophreniaRosacea

Audiences within them

PatientsCaregivers and parentsRecently diagnosedTreatment-naiveTreatment switchersLate-stage and palliative care

From our files

Conversations at the end of the journey.

20 patients and caregiversLate-stage metastatic diseaseOnline video interviews

An agency studying treatment decisions near the end of life asked us to find patients nearing the end of their journey, and the caregivers beside them.

Using referral sources, networking, and advertising, we found 20 patients and caregivers willing to share their stories. Every patient had late-stage, fully metastasized disease and was either under palliative care or deciding whether to discontinue treatment. All took part in online video interviews.

Formats

The method that fits the patient.

In-depth interviews Dyads and triads Small groups Online and video Telephone In-home ethnographies Diary studies Patient and caregiver pairs

Questions buyers ask

Rare disease recruiting, answered.

How long does a rare disease recruit take?

It depends on the condition, the criteria, and how many people are living with it right now. Because patients' situations change quickly, we start recruiting and networking right away and keep you posted as we find qualified people.

Can you tell us up front how many qualified patients you have?

We would rather be honest than impressive. Any database count, ours or another supplier's, can include patients whose disease has progressed, who have changed treatments, or who have passed away. We find people who qualify today, then confirm them again before the session.

Can you work from our patient list or an advocacy partner's list?

Yes. Client-provided lists are used only for your study and handled according to the project agreement, including return and deletion requirements.

Do you recruit caregivers and parents of pediatric patients?

Yes. We recruit caregivers, parents, and household decision makers, and we make sure the right person is in the session.

How do you protect patients' health information?

We ask consent before collecting health information and again before sharing it with your research team. See our Consumer Health Data Privacy Policy.

Related services

Request a bid

Send the screener. We will start looking.

Include the condition, criteria, number of respondents, format, markets, and timing.

Request a bid Call (212) 779-0033

Rare disease patient recruiting.