When it comes to mental health, rare disease can put you on shaky ground. You’ve likely faced years of uncertainty just waiting for a diagnosis. Not knowing what is wrong or what to expect in the future is scary and unsettling. Because little is known about many rare diseases, there may be no one to turn to for answers. No wonder stress is the main culprit affecting mental health for people with rare diseases.

Dr. David Fajgenbaum was in his third year of medical school when a rare and mysterious illness derailed his plans. Crushing fatigue, abdominal pain, and multiple swollen lymph nodes progressed rapidly, and he found himself in the ICU with multiple system organ failure. Recovering from the brink of death, he was diagnosed with Castleman disease (CD), a rare condition that at the time was thought to be a lymph node disease with similarities to cancer.

How do you go about finding an expert who understands your rare disease and can answer your questions? Where can you find more information on your condition to share with the specialist(s) helping with your care? Unlike most diseases, in rare disease, the doctors conducting the clinical trials are usually the leading experts on that rare disease. This is because there may be so little information available on a particular rare condition that anyone studying it becomes a top expert almost by default.

Here are some recommendations from people who have learned how to find the experts and information they need.

The IGA Nephropathy Foundation is a nonprofit dedicated to the eradication of IgA nephropathy (IgAN), an autoimmune disease that attacks the kidneys.

The Rare Advocacy Movement (RAM) is a rare disease community leadership network focused on addressing issues that affect the real-world people of the global rare disease community.

Next to a focus on self-care, social support may be the most important factor in successful long-term coping with ambiguous loss (AL)—a sense of loss characterized by uncertainty about the loss of a loved one and/or the life we once knew.

7 tips for finding the right clinical trial for you and how Know Rare makes it easier to find a clinical study and talk to a researcher.

Rare patients can run into trouble accessing treatments for any of a number of reasons. Perhaps the medication your doctor would like to try is not yet FDA-approved for your condition. There might be a clinical trial you want to take part in, but you do not meet the eligibility requirements for that trial. Or maybe your health insurer is reluctant to pay for a newly available medication. Whatever the reason, there are programs that may offer hope.

The RDDC was established at a pivotal time, as the United States continues to grapple with the impact of the COVID-19 pandemic and the glaringly evident racial disparities that exist regarding infection rates, treatment, and access to care.

Each January, San Francisco hosts a one-of-a-kind gathering of movers and shakers. Billed as the world’s largest and most informative healthcare investment symposium, the annual JP Morgan Health Care Conference attracts a unique mix of health, tech sector, and financial industry professionals. Their backgrounds may be different, but they come together with a common goal: to explore the trends and market forces that will shape healthcare in the years to come.

Every year, researchers present the latest findings at the ASH annual meeting in December. Here are some brief updates illustrating ways in which ASH members are working to advance the understanding and treatment of blood diseases, which were recently presented at the annual meeting in December..

For many, “experimental” is what may come to mind when hearing about a clinical trial, which makes the prospect scary. However, for someone who has a rare disease without a treatment, the course ahead may already be filled with so many unknowns. Participating in a clinical trial can offer the opportunity to get access to care with doctors who are likely experts in the studied disease. But the key is, do not be afraid to ask.

Adaptive clothing is clothing created to solve problems. Makers of adaptive clothing specialize in apparel, footwear, and accessories designed to make life easier for those with mobility issues and other special health needs. All aim to improve comfort and accessibility, promote independence and dignity, and make wearers look good and feel good.

Ambiguous Loss is unique in that people facing this kind of loss are denied traditional closure rituals and acknowledgements, like memorials and respite periods, as well as typical social support and bereaved status. They are expected to carry on as usual, and may be stigmatized when they do not.

From trailblazing researchers to game-changing public health advocates, women in medicine historically faced marginalization due to their gender, and, in some cases, their race. Nonetheless, they changed the playbook for the physicians who would follow them, as well as for the patients who would benefit from their discoveries in the future.

Myasthenia Gravis (MG) is an autoimmune disease in which the immune system produces antibodies that interfere with normal cell function, instead of attacking invaders like bacteria and viruses.

People with rare diseases may be feeling more vulnerable than usual as the holidays approach. As people spend more time indoors, the number of COVID-19 cases continues to rise. But some experts say that those with rare conditions might have better-than-average coping skills in handling the changes brought by the global pandemic.

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