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Rare Patient Voice, LLC connects patients and family caregivers with the companies and researchers who need their opinions and experiences. We connect clients with hard-to-recruit respondents through our panel of over 145,000 patients and caregivers, whom we meet at in person awareness events and through patient advocacy groups. Our community members are authentic and look forward to research opportunities through RPV, for which they are compensated. We recruit for qual and quant within 2 weeks. We don’t conduct the research, we find the respondents. Our panel includes patients and family caregivers in the US, Canada, UK, France, Germany, Italy, Spain, Australia, and New Zealand. Visit www.rarepatientvoice.com for a list of panels, counts, pricing and PAM, our 24/7 DIY proposal tool.

Rare Patient Voice

For smaller businesses ready to expand their brand reach and online presence

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United States of America

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Australia

Canada

Germany

France

Italy

New Zealand

Spain

RPV is fantastic.  Their attention to detail is superb.  They are working very diligently and intelligently to help us find the optimum recruits.  And their communication is the best.

We would like to post some testimonials from our clients on our website and I thought of you. If you are comfortable (and okay with your name and company being shared), please share your comments about your experience with Rare Patient Voice.

Rare Patient Voice provides panels of patients and family caregivers with rare and non-rare diseases for research studies of all kinds.

Customer Experience Research

Market Research with Patients

Online Research Panels

Recruiting for Online Surveys

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Mary Jane, the award-winning play by Amy Herzog and starring Rachel McAdams, just ended its run on Broadway last month. It is the compelling story of the mundane life of a single mom caregiver of a child with a rare disease, and her interactions with many women across a wide range of roles.
I didn&rsquo;t have the opportunity to see the play, but from what I&rsquo;ve read, it captures what caregiving is all about. From the review in&nbsp;The New Yorker, you get a taste: &ldquo;Despite Mary Jane&rsquo;s fantastic organizational skills&mdash;she has to be organized in order to take care of her son, and get as much out of the healthcare system as she can&mdash;her extreme capability is also a way of obscuring her own needs.&rdquo;
At <a href="https://www.rarepatientvoice.com">Rare Patient Voice</a>, we surveyed 735 family caregivers of patients across dozens of rare diseases in December, 2023. What we found will not be news to caregivers, but we can support Amy Herzog&rsquo;s art with the science of our findings.
Mary Jane is a woman taking care of her young son. We found over 90% of rare disease caregivers are female, and a majority of the loved ones they care for are male.
The voice of the caregiver that comes through loud and clear from the survey results is the overwhelming time commitment required of caregivers. By far the greatest impact on family life is the time commitment, mentioned by over two-thirds of respondents. Caregiving is a lot of work! On average, caregivers reported performing more than 8 tasks, such as medication management, housekeeping, meal prep, transportation, companionship, etc. You can see that each &ldquo;task&rdquo; is actually multiple tasks.
<img style="display: block; margin-left: auto; margin-right: auto;" src="https://greenbook-ent.directus.app/assets/3f5d9314-cfa2-401d-a07d-335881215a6c.png?width=1300&amp;height=372" alt="Caregiver Loved One Deal With Medical Professionals">
Because of this large time commitment, other things fall by the wayside. Caregivers reported they are unable to pursue hobbies, and they are unable to spend time with other family members. As one mentioned, &ldquo;My daughter&rsquo;s schedule and needs are the first to go into our schedule, and all other family and sibling needs trickle in. Sometimes it&rsquo;s hard to manage.&rdquo;
Another said, &ldquo;My husband and I have had to &lsquo;divide and conquer&rsquo; parent so one parent could be with our other children and one could be with my child with the rare disease.&rdquo; One summed it up well, &ldquo;We adapt and make it work, but we are limited in our travel, food choices, friends we keep, and time we have available.&rdquo;
How does one give full attention to their profession if they are taking care of a loved one with a rare disease? Not very well, according to our panel. Nearly two-thirds revealed that they are not as financially well off as they would have been. Many were forced not to seek employment, or couldn&rsquo;t seek better employment or educational opportunities.
Some were forced to stop working, or had to work part-time. Others missed out on promotions, or stayed in a job they would have rather left. Only one in ten said they&nbsp;didn&rsquo;t suffer from any employment/career/education issues.
Those not in the rare disease community might be surprised to learn of the great difficulties that rare caregivers have in dealing with medical professionals. It is a bit of a love/hate relationship. Treatments and cures wouldn&rsquo;t be possible without the determination of the medical community.
However, the lack of awareness and understanding among health care professionals about rare diseases causes friction. Nearly 80% of caregivers reported that they know more about their loved one&rsquo;s disease than some of the medical professionals they encounter. They&rsquo;ve had to tell medical professionals that they are wrong &ndash; not an easy task.
They&rsquo;ve had medical professionals not believe them. Rare caregivers often tell us that, completely unexpectedly, they had to become experts in their loved one&rsquo;s disease. Many go on to found patient advocacy groups for the condition. A few have even established pharmaceutical companies to work towards a cure. But that specialized knowledge is not always appreciated by health care professionals.
A caregiver told us, &ldquo;I have felt as though I am threatened by medical providers if we do not provide care the way they want us to, even if the care they are suggesting is not the best care for our loved one.&rdquo; Another one said, &ldquo;I have learned to stand my ground, especially when medical professionals have argued with me.&rdquo;
<img style="display: block; margin-left: auto; margin-right: auto;" src="https://greenbook-ent.directus.app/assets/5bab7710-c6d1-42ef-ad74-1245cb88865d.png?width=1300&amp;height=555" alt="Caregiver Loved One Affected Emotionally">
The 24/7/365 burden of rare disease caregiving not surprisingly also carries an emotional impact. Large majorities of caregivers reported suffering from anxiety, caregiver burnout, and emotional distress. About half feel isolated and depressed. But less than half have sought help for their emotional/mental issues. And caregiving can take a physical as well as emotional toll. As one told us, &ldquo;My own health has suffered due to taking care of my loved one.&rdquo;
And while some reported that caregiving for the rare disease brought their family closer together, others noted it caused marital difficulties and even marriage failures.
The difficulties of caregiving have been well-documented in our results. What would make caring easier? Caregivers need to be able to take a break, but need to be assured that anyone filling in for them understands the details of the patient&rsquo;s situation. And they feel that is unlikely.
As one put it, it would help if they had the &ldquo;ability to have a &lsquo;break&rsquo; but have the patient with knowledgeable, qualified individuals.&rdquo; Many mentioned that having financial assistance would help. Also brought up was increased awareness, desiring that &ldquo;school healthcare providers and regular healthcare providers be more knowledgeable.&rdquo; And &ldquo;more societal support and understanding of the role of caregivers.&rdquo;
We recommend healthcare researchers learn from these findings to develop empathy for the caregivers with whom they interact. It will go a long way toward teasing out valuable insights from their responses.
<img style="display: block; margin-left: auto; margin-right: auto;" src="https://greenbook-ent.directus.app/assets/c36618ea-828f-4eeb-b15e-2c1886288239.png?width=400&amp;height=680" alt="Caregiver:patient Gender">

Gain insights into challenges faced by caregivers of rare disease patients. Explore emotional, financial, and personal impacts of this life-changing journey.

When Caring Is Personal: Insights from Rare Disease Caregivers

Editor&#8217;s Note: Many <a href="https://www.greenbook.org/market-research-companies/canada">market research companies</a> are pretty small businesses, in the greater scheme of things.  One of the factors that make running a small business so hard is managing cash flow.  Since the financial crisis of ten years ago, many client organizations have noticeably stretched out payments.  As Wes Michael eloquently describes, this can have severe effects on supplier companies, and it winds up hurting everyone.  If small <a href="https://www.greenbook.org/market-research-firms/europe">research companies</a> have to tap into credit lines to pay staff or respondents, that ultimately comes back to clients in the form of higher prices &#8211; or, can even put someone out of business.  Market research is going through a phase right now where there are many startups launching.  It would be a shame to lose some of the innovations they can bring to the market because they can’t get to profitability because of cashflow issues.
<hr />
<h3>The elephant in the room &#8211; let&#8217;s talk about it</h3>
Remember Joan Rivers? She used to ask, “Can we talk?” Now I’m asking – can we talk? 
This might be sensitive to many of our clients. But I bet many other vendors, small companies such as ours, can relate. 
Don’t get me wrong, we love our clients. And they all end up paying us what they owe. But here is what I want to discuss – why do some companies take so long to pay?
We state our payment terms as 30 days. But only 27% of invoices paid this year were within 30 days. 73% were longer. The average was 53 days. For you stats buffs, the median was 47 days – meaning half were paid within 47 days, and half were longer. I notice that some clients only pay after getting a reminder.
<h3>The impact</h3>
What’s the big deal? It’s all about cash flow. When you hear small businesses fail because of cash flow, believe it! You can be profitable on paper, but paper doesn’t pay the bills. Cash pays the bills. At any given time, we have over $400,000 in accounts receivable. That means money owed to us for work completed that we are waiting to receive. People call it “money on the street.” If we could collect more often within 30 days, that money wouldn’t be on the street, it would be in our bank account for us to pay our bills.
No matter when we are paid, we pay our respondents as soon as the study is complete. We think they deserve that. It keeps them loyal, and many need every dollar. But when we pay patients before we’ve been paid, you can see what it does to our cash flow. That is why we invoice for honoraria up front. But we still don’t get it right away.
Some of our clients say they can’t pay until their clients pay them. I get that they are also in a cash flow squeeze. But does General Motors not pay for its steel until after it sells a car? I think not. 
Some of our larger clients state they have 60-day or even 90-day terms! And those with 60-day have said they pay at the end of the month after 60 days. So, it could be up to 90 days. Isn’t that a bit ridiculous? Interest rates are very low, please don’t delay payments to earn a piddly amount on the money you owe us!
<h3>The bigger picture</h3>
So many of our clients talk about having a partnership. But a partnership means valuing our service and paying in a timely manner. I appreciate what one of our clients said – they always pay very quickly. They said they realize they are a smaller company, and if they can gain the extra cooperation of vendors by paying quickly, they think it is a good deal. I agree! Put your money where your mouth is when it comes to partnership!
Let me know what you think. Is slow payment a problem for you? How do you handle it? 
Thanks.

Paying Your Bills

Rare Patient Voice provides panels of patients and family caregivers with rare
and non-rare diseases for research studies of all kinds. Towson, Maryland, United States of America.

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