Rare Disease Day is February 28th, 2022. If you haven’t heard about this day yet, we are so excited to tell you all about it. If you or someone you know has a rare disease, this is your opportunity to share your story or support others who have shared theirs. Through the awareness we spread, we are able to further progress the research and advocacy for those with rare diseases.
Rare Disease Day is the perfect time to join in solidarity with Periodic Paralysis sufferers. There is strength in numbers! Whether you have periodic paralysis, you think you might have it, or you don’t have it but want to help, you can take action for this important cause.
What Is Rare Disease Day?
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. Since its creation in 2008, Rare Disease Day has united and built a community of individuals around the world with rare diseases that all have the same goals: working towards equity, social opportunity, healthcare, and access to diagnoses and therapy.
Rare Disease Day provides awareness. Something very crucial in rare disease advocacy and allows work to progress on the local, national and international levels.
These are some of the challenges individuals face with rare diseases, and what Rare Disease Day is trying to overcome:
- The lack of scientific knowledge and quality information on rare diseases. This often results in a delay of diagnosis.
- The need for appropriate quality health care. There are many inequalities with access to treatment and care. This often results in heavy social and financial burdens on patients.
- Initial misdiagnosis is common. There is a broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases. Symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.
- Research needs to be international to ensure that experts, researchers and clinicians are connected.
Did you know that rare diseases affect more than 350 million people worldwide?
One big obstacle many rare disease sufferers face is that doctors don’t always know how to help them. There’s a saying that goes, “When you hear hooves, think horses, not zebras.” This metaphor describes the way a lot of doctors think. They see a patient with mysterious symptoms, and they assume the disease is something that’s common a “horse.” A rare disease is the “zebra” that doctors aren’t thinking about. This results in rare disease sufferers getting misdiagnosed and not receiving the right kind of care.
But people with rare diseases are resilient, and they don’t give up. Rare Disease Day is a celebration of them and their journeys. Many organizations around the world participate in Rare Disease Day, including the Periodic Paralysis Association. Our mission is to support and empower people who have periodic paralysis. That’s why this day is so special to us.
Each year the PPA participates in celebrating Rare Disease Day to spread more awareness about Primary Periodic Paralysis.
Periodic paralysis is a term that describes a group of genetic disorders that cause episodes of muscle weakness or paralysis. These episodes can last for several minutes, hours, or even days. There are multiple things that can trigger an episode, such as resting after exercise, awakening from sleep, eating certain foods, or being in a cold environment.
Living with this disorder can be challenging and frightening. People with periodic paralysis have family, friends, jobs, and hobbies, just like everyone else — but they often have trouble living their lives the way they want, because they’re worried about their next paralysis attack.
The vast majority of people have never heard of periodic paralysis. Another major problem in the periodic paralysis community is being misdiagnosed. When these patients visit the hospital, doctors tend to give them a diagnosis of a common disease instead of thinking that the problem might be a rare disease. Sometimes, these patients go many years without a periodic paralysis diagnosis.
People who have rare diseases need medical care from doctors who understand what is happening in their bodies. They also need cures and treatments to be discovered, which means that researchers have to have funding. One more thing people with rare diseases need is support from people who genuinely care about them. Rare Disease Day is about providing all of these things and more!
Here’s how we’re participating in Rare Disease Day this year:
This year we’re supporting The Everylife Foundation’s Rare Disease Week on Capitol Hill. The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
Rare Disease Week on Capitol Hill will take place virtually February 22nd-March 2nd.
RDLA will schedule virtual meetings for advocates with Members of Congress on March 1st and 2nd, as well as provide training and other virtual advocacy events during the week leading up to the meetings.
You can find more information and register here.
We are also sharing brand new Summit Series Videos
Last year we premiered our first docu-series videos and they are not over yet. After a wildly successful 2021, we’re sharing tons of great new content to commemorate Rare Disease Day.
A new Video premieres every Tuesday at 10 AM EST and will be available on our YouTube channel. These presentations were filmed at the annual 2021 PPA Conference in Orlando, Florida. There are six different doctors sharing their latest insights about PP and topics that include:
- Repurposing specific drugs to prevent the attacks of Periodic Paralysis
- The Importance of Safe Anesthesia Practices for Patients with Periodic Paralysis
- Astonishing results from genetic testing
- The treatment for Paramyotonia Congenita
- And tons more relevant and new information about Periodic Paralysis
Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public, can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention.
Here is how you can help:
There is strength in numbers! Whether you have periodic paralysis, you think you might have it, or you don’t have it but want to help, you can take action for this important cause.
- Join the virtual events during Rare Disease Week on Capitol Hill and learn how you can advocate for individuals with rare diseases. Everylife Foundation is a wonderful organization with many resources to help you make a difference in the world of rare diseases. Check out their website now and register for these free virtual events.
- Watch and share our videos with your community to help spread awareness about Periodic Paralysis and all Rare Diseases. The PPA is always sharing the most up-to-date information.
- Spread the word on social media – Social media is a great way to raise awareness of Rare Disease Day. You can make a post telling your followers about Rare Disease Day with the hashtags #rarediseaseday. Sharing the PPA’s posts is another way you can raise awareness on social media. The more people who post and share, the bigger impact will be made! Check out our Instagram, Facebook, YouTube, and email newsletter to see what we’ve got going on. You’ll get lots of helpful info, patient stories, and more. (Always feel free to leave a comment and share your thoughts — we’d love to hear from you!)
- Tell your story – If you are living with periodic paralysis, you may be used to other people not understanding how you feel. Now, here is a chance to put your story out there and let your voice be heard! You can describe your experience and submit it with a picture or video to the Rare Disease Day website.
- Donate – Donating is powerful because it helps fund vital research! Dr. Stephen Cannon, a neurologist at UCLA, is one of the leading researchers on periodic paralysis. He has spent years doing painstaking work to learn more about this unusual disorder. Without hard working scientists like Dr. Cannon, treatments and cures would never be found. Donations are critical to helping this research happen. Even $5 or $10 can go a long way. Whether large or small, your donation is greatly appreciated!
It’s Almost Time…
On this special day, let’s raise our voices to spread awareness of periodic paralysis. We are optimistic that there will be a cure discovered someday. In the meantime, the best thing all of us can do right now is LISTEN to those with periodic paralysis and advocate for their needs. We’re in this together!