Human connection is critical to all our mental health during this time. Here are a few creative ways to remind your friends and family you care.
People who are already managing existing health conditions may need to take some extra precautions and make plans to keep their care consistent.
In honor of Rare Disease Day, we’re sharing a behind-the-scenes look at what inspires RDMD staff members to push for advancements in rare disease research.
Patient registries can be an important tool to centralize information about a rare disease community. RDMD is a research platform that can complement registry efforts by providing the audit-trailed and research-ready data needed to push research forward.
Emily was so consumed with caring for her son, who has a rare disease called Hunter syndrome, that she neglected her own well-being and faced grave consequences.
Mindy has been a little warrior since day one. She, and her family, are managing a rare condition called ITP that could be life-threatening, or could resolve itself in time.
Rhonda created Myositis Warrior as a fresh way to raise awareness for inclusion-body myositis, known as IBM, and other rare diseases.
Thaddeus, 6, has a rare disease called NF1. His parents have to manage his care with the limited knowledge available about the disease.
Fred has tried medications, platelet transfusions and surgery, but won’t let his condition keep him from the most important life experiences.
For rare diseases, it’s critical to learn more about a condition before effective trials can be developed. That’s where a “natural history study” comes in.
Dayna’s studies as a speech pathologist helped her push for a diagnosis for her father’s neurological condition, and gave him a voice as the disease progressed.
Drug development for any disease is a complex, expensive and slow process. Layer on top of that developing drugs for a condition that impacts a limited population, and we as a rare-disease community are up against some unique challenges.
Carrie Szeles was told many times “you’re crazy” for thinking something was seriously wrong with her health. Now, she’s often told she doesn’t “look sick.” Through it all, she had to learn to be her own advocate and strongest supporter.
Elise Drake-Esposito was just weeks away from giving birth to her second daughter when she learned her five-year-old, Keira, had a rare, fatal genetic condition.
Ashly Wiebelt built her career as a speech therapist helping children with special needs. Now, she’s advocating for her own child with special needs, and fighting for his life.
by Kristina Cotter, PhD, CGC
A research consent is designed to protect patients from participating in research they don’t understand or agree to. In our research consent, we describe what RDMD Research is and tell you about any associated benefits or risks. We set up our research this way because we think it’s important to get your permission before we do any research using your information.
We started our ambassador program because of an overwhelming desire from patients and caregivers to get more involved in RDMD’s work and research. Patients were excited about RDMD’s product and mission, and felt eager to help in other ways, including by sharing information and answering questions about RDMD within their own communities.
by Talea Miller
You may have questions about how RDMD keeps your health information safe and secure—many other patients have reached out about this very thing. We take security and data privacy very seriously—in fact, it’s one of our top priorities. We created a summary below to help you understand our privacy and security efforts. We work alongside experts in data privacy and security to ensure that the proper controls are in place for the data you trust us with. We know how sensitive your health information is and how big a deal unauthorized access would be. Please feel free to reach out to us about anything relating to data privacy and security. Below we explain in more detail how we keep your data safe.