In celebration of Rare Disease Month, we are thrilled to shine a spotlight on Change Champions, dedicated partners, and organizations making a lasting impact on rare disease research throughout the year. At the forefront of this movement is Rare Patient Voice, a remarkable resource founded with a singular mission – to provide patients and family caregivers a platform to be heard by actively participating in diverse research endeavors, including rare diseases.
This initiative thrives on direct connections and word of mouth, cultivating a vibrant community of over 145,000 individuals across the globe.
To delve into the significance of rare disease research and advocacy, we had the privilege of sitting down with Laura Mullen, the Director of Marketing and Communications at Rare Patient Voice.
At Rare Patient Voice, we connect patients and family caregivers with the opportunity to voice their opinions through participating in all types of research to improve medical products and services. This empowers them to be heard and enables researchers and companies to include the insights of patients and family caregivers in their decision-making.
Many patients tell us that participating in research (i.e. talking with a moderator, engaging with other patients in a focus group) can be very helpful, and is similar in some ways to being part of a support group. Through our Weekly Warrior and Sharing My Voice video programs,we provide platforms for patients to share their stories and inspire other patients along their journey. We also provide information about advocacy and support programs that patients might not already know about on our website and in our newsletter.
According to EURORDIS, 300 million people are living with a rare disease worldwide, with over 30 million in the United States alone. There are thousands of known rare diseases and only a fraction currently have safe, effective treatments. Research is a vital step in the process of developing new treatments and cures.
There are many different types of research, ranging from market research, health economics outcomes, real-world evidence, and user experience/human factors studies, to clinical trials. Many research studies can be done from home, online, or via telephone. Patients should consider what is most convenient for them and whether they are interested in a specific kind of study. Rare Patient Voice connects patients and family caregivers with opportunities to take part in all kinds of research and is easy to join.
Individuals with a professionally diagnosed medical disease can join the Rare Patient Voice community by providing some basic information about themselves and their health, which is kept confidential. They are then alerted via email when recruitment is underway for a study that matches their disease or condition. Depending on the study, we may also contact them by text message. Once they have joined RPV, members will also receive a monthly newsletter that provides news, and information, and highlights open study opportunities.
Visit Rare Patient Voice’s website to get more information on how you can sign up. If you would like to participate in research with PicnicHealth, search for an active study here.
Empower people to own their medical records. Advance medicine. We’re a passionate group of doctors, patients, data nerds, engineers, and builders, who believe in making something real that changes lives today and in the future.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below.
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