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Rare diseases are complicated and communicating reliable, accessible health information around them can be even more complicated. 

Some conditions like RPI deficiency or Aicardi syndrome affect less than 1,000 people worldwide, making it difficult to diagnose and treat. 

On top of that, rare diseases primarily affect children, often requiring a caregiver to be part of their treatment plan. 

The relationship between caregiver and rare disease patient is an interesting one that offers insights into how healthcare is accessed by various communities.

A recent report from Golin Health, a 2025 MM+M Agency 100 honoree, delved into that complex relationship — indicating it is more complex than previously thought. 

The survey primarily focused on rare disease patients between the ages of 16 and 23, as well as caregivers between 25 to 55 years old. Hemophilia, albinism, cystic fibrosis and Gaucher disease were the top represented rare disease states amongst respondents. 

One of the survey’s key findings is the gap in communication between patient and caregiver regarding a patient’s ability to manage care independently when the time is right. 

Nearly 80% of caregivers said they fear that their loved one is not equipped for health independence.

However, of the 79% of rare disease patients who achieved independence, 29% said they were fully prepared and 50% said they were somewhat prepared.  

Plus, when independence is gained, there can sometimes be tension between the patient and caregiver over the best course for treatment. 

More than three-quarters of patients said they intend to change treatment plans, while 53% of caregivers expect treatment to remain the same. 

Of the patients who had already achieved independence, 76% confirmed changing treatment plans and their daily activities, while 57% said they changed their mental health support. 

These findings show that patients are taking things into their own hands post-independence, a crucial consideration for marketers crafting marketing plans for their health clients.  

“This tells us that there’s a real opportunity for [medical marketers] to consider this life transition, and perhaps, other life transitions where additional resources would be helpful,” said Jaimee Reggio, managing director of U.S. healthcare at Golin Health. 

Also mentioned in the report, caregivers and patients said they are looking for more in-depth conversations with HCP teams as well as guidance about long-term care options. 

Both sides said they are looking to further understand how treatments work and how to measure success for rare disease patient outcomes. 

This feeds into the narrative around preparedness for the rare disease community, as patients have reported feeling less prepared than other patient groups with health concerns. 

Specifically, patients shared that during the transition into independence, they feel they need guidance from HCPs the most.

Guidance from HCPs is the most influential factor when choosing a treatment for patients, per the report, followed by peer-to-peer conversations and mental health resources. 

Educational materials were last on the list, with only 26% of patients reporting that they value these resources when transitioning into independence. 

Once patients get to that level of independence, however, things shift a little. They stated that the resource that helped them the most were mental health resources, followed by guidance from HCPs and peer-to-peer conversations 

This provides medical marketers with the opportunity to fill this gap with the resources that patients and caregivers want. Still, achieving this requires knowledge of how and where rare disease patients and caregivers are getting their information. 

Reggio pointed out that the survey patients turn to advocacy groups and social media for daily management of their disease, while caregivers refer to treatment websites and physical HCP materials the most. 

While caregivers said they value HCP guidance and peer support groups as well, Google and medical news outlets also ranked high on the list for getting treatment information. 

Reggio reiterated the importance of HCP communication for rare disease patients and the opportunity for medical marketers to better support healthcare professionals in these circumstances. 

“I’m not just talking about doctors, I’m talking about the entire care team within the doctor’s office,” she said. “We know that the doctor’s appointment length is short, so we need to look at ways and tools to improve communications between patient and provider.”