Author: Magdalena Flores Arocena, Manager of Participant Experience, Suvoda
Snapshot:
- Rare disease trials carry high enrollment and retention risk. With patient populations small, dispersed, and often pediatric, every participant is irreplaceable, and any operational friction can end a study.
- Concierge coordinators are the operational difference between a family who completes the protocol and a family who cannot. They can handle visas, housing, equipment, reimbursements, language, and crisis response across borders.
- For sponsors and CROs, concierge support is a protocol-level investment, not a line item. A single dropped patient in a complex trial can cost more than $150,000 to replace, and in rare disease studies, replacement often is not possible.
For families living with a rare disease, a clinical trial is rarely one option among many. It may be the only treatment available, and it may be thousands of miles from where they live.
That reality shapes how a rare disease trial needs to be designed, staffed, and supported. There are more than 7,000 known rare diseases, affecting over 300 million people worldwide. More than 90% of rare diseases still have no FDA-approved treatment, and more than half affect children.1,2
Roughly 30% of Phase III trials fail to enroll participants, and patient dropouts average around 19% in late-phase studies industry-wide.3 For a rare disease study where every participant is critically important, those numbers demonstrate why additional high-touch support is warranted.
This is where Greenphire Travel at Suvoda, and the concierge coordinator model behind it, earns its place in the protocol.
What a concierge coordinator does for patients
Suvoda's concierge coordinators span 42 countries and speak 35 languages. They are local. They know the healthcare system, the banks, the airlines, and the immigration requirements in the country where the patient lives. When a family is partnered with a concierge coordinator, that coordinator stays with them for the duration of the trial, sometimes five years or more. They handle what one expects when it comes to travel logistics: flights, hotels, trains, visas—but the support can extend far beyond those examples.
To explain what that looks like in practice, I want to share three stories from a rare neuromuscular disease study we’ve supported for several years. The trial enrolled infants with a severe form of the condition, with a very short enrollment window. Without treatment, most of these children aren’t expected to live past age two. Sites were limited worldwide, so families had to travel long distances to reach one. In many cases, families were relocated to the country of research site so their child could participate in the clinical trial.
Sustained care through crisis: Southeast Asia to Europe
One of our senior global study managers (names withheld for privacy reasons) oversaw the support for an infant in a Southeast Asian country whose nearest site was in Europe. Our concierge coordinator arranged short-term visas, shipped the family's belongings across continents, sourced accessibility-compliant housing, purchased the medical equipment the baby needed on arrival, and enrolled the mother in local language classes.
Then, the unimaginable happened. The father had to return home to Southeast Asia, and shortly after, the mother passed away in Europe. Our concierge coordinator secured visas for the patient's extended family to relocate from Southeast Asia as new guardians. Our coordinator personally arranged the mother's funeral services in Europe and worked with authorities in both countries to repatriate her remains for local religious traditions. Over the following months, they navigated legal systems across two countries to support a formal adoption for the infant by extended family. The patient did not miss a single protocol visit. Throughout all the emotional and logistical challenges, the concierge coordinator remained the steady, common thread of support for this family.
"It is easy to think of us as a travel and reimbursement company. This story shows we are so much more than that. Coordinators became a true extension of these families, and we did whatever it took to support patient safety and study compliance."
-Suvoda concierge coordinator from Europe
Support beyond logistics: One European country to another
Suvoda’s concierge coordinator in Central Europe helped relocate a family with infant twins; one had the disease, the other did not. Soon after relocation, the affected infant was hospitalized. Local public healthcare eligibility requirements meant the family did not yet qualify for a publicly funded home ventilation program, and the hospital would not release the baby without one in place. After weeks of negotiations across three hospitals and roughly 30 doctors and nurses, the concierge coordinator helped broker what we believe was a first-of-its-kind private agreement to replicate the program outside the public system. The baby went home to be cared for by their family, while still participating in the clinical trial. This type of coordination and the level of empathy that went into offering this solution was life-changing for the family and would not have been possible without the concierge coordinator.
"We were faced with a very unique and challenging situation. What made the difference was the persistence to keep looking for people who were willing to help, explore different options, and work together toward a solution.”
-Concierge coordinator from Europe
Overcoming barriers and making a way for care: Rural Brazil to urban, southern Brazil
A Suvoda concierge coordinator in Brazil supported a low-income family and their infant living in a remote area in northeast Brazil with nearly every logistical challenge one could imagine getting to and from their study visits. The site was thousands of kilometers away from the family’s home, roughly the distance from Philadelphia to Las Vegas. Dirt roads, an unstable phone signal, and no internet were all obstacles the family needed to overcome during travel planning. The family had never traveled by air before and lacked stable income. The concierge coordinator helped them learn how to pack a suitcase, guided them through their first airport security check, and secured the medical permits airlines required for the baby's breathing equipment. The concierge coordinator also worked around the clock when the family’s flights were canceled, so the medication window did not close. The patient never missed a single study visit in the five years under the coordinator’s care. The supporting concierge coordinator met the family’s needs and supported every visit the protocol required.
"We work with the most advanced science and the latest innovations. Our team brings those treatments to people who would never have dreamed of having this opportunity. Bridging those worlds fills you with satisfaction that is difficult to describe."
-Concierge coordinator from Brazil
The concierge model made it possible for patients and their families to stay enrolled
Three important points come to mind from these stories. First, patient retention can be significantly improved when the right support model is in place. Across the three families above, every patient completed the protocol, despite circumstances that would otherwise likely have ended their participation.
Second, concierge support can be a critical investment in patient retention, particularly in rare disease trials. The cost of replacing a single dropped patient in a complex trial can exceed $150,000, and in rare disease studies the patient often cannot be replaced at all.4
There is a third point, and it may be the most important. Software schedules the visit but it’s people who keep the family in the trial. Behind every successful rare disease study using Suvoda’s concierge travel services is a coordinator who treats each family as their own personal commitment. These are compassionate helpers who answer the phone after midnight, who speak the family's language, who know how to negotiate if a health system falls short, or how to navigate an airline's medical permit process. That human care and judgment is what carries a family from enrollment to last visit.
I’d like to share two recent notes that our concierge coordinators received from their patients, because they demonstrate how invaluable they are to clinical trials and their participants:
“You are amazing to work with and I really appreciate all of your help with all of this because it has been the hardest thing I have ever had to deal with. From the bottom of my heart, THANK YOU!”
- Clinical trial patient
“What could easily be a stressful experience is made calm and manageable thanks to you. Even your simple check-ins to see how we’re doing make a huge difference. Knowing that things like meals, flight schedules, and transfers are taken care of allows me to focus entirely on us and that peace of mind is priceless. You truly go above and beyond.”
- Clinical trial patient
For sponsors and CROs developing rare disease therapies, patient support must be built in to surmount the real demands families face. That means choosing services that reduce logistical, financial, and administrative strain from the start, so participation feels more manageable for patients, caregivers, and sites alike.
Author
Magdalena Flores Arocena
Manager of Participant Experience, Suvoda
References:
- Overcoming reach and recruitment challenges to engage rare disease patients in clinical trials. The Conference Forum. October 2025.
- Rare disease patient recruitment and retention. Clinical Leader.
- Tufts Center for the Study of Drug Development. Impact report. Cited in: Can recruitment and retention get any worse? Applied Clinical Trials.
- The true cost of patient drop-outs in clinical trials. mdgroup. March 2026.
