EveryLife Foundation for Rare Diseases’ Post

As #RareDiseaseDay approaches, and I spend the coming days at #RareDiseaseWeek on Capitol Hill, I’ve found myself reflecting on the importance of awareness. How #RareDisease recognition can genuinely transform the treatment and research landscape. How it can help people share their stories. to the rare disease community, I would like to ask — what parts of sharing your story are most difficult for you? What would make it easier or more comfortable for you to share your experiences? In what ways do you feel like we can better facilitate story-telling? 

Honoring Rare Disease Day: Championing Hope, Awareness, and Action! Today, we unite to shine a spotlight on the often overlooked yet profoundly impactful realm of rare diseases. As we commemorate Rare Disease Day, it's not just about acknowledging the challenges faced by those affected, but also about igniting a collective flame of advocacy, innovation, and support. In our journey towards a healthier, more inclusive world, understanding and addressing rare diseases is paramount. These conditions affect millions worldwide, each with its unique set of hurdles and intricacies. However, within the rare lies the extraordinary - stories of resilience, innovation, and unwavering determination. Join me in honoring Rare Disease Day, and let's continue our journey of advocacy, compassion, and impact. Together, we can make a difference. #RareDiseaseDay #HopeInAction #TogetherWeCan #ThatsICONic

#RareDiseaseWeek is as good a time as any to raise awareness about these under-the-radar conditions. Our daughter Amelia was born with the CLN1 variant of #BattenDisease, and it has steadily robbed her of skills and abilities since she was about 2. It can turn even routine illnesses into life-threatening situations, like earlier this month when a bout of flu resulted in a month on life support (and it came very close to being much, much worse). We need to allocate more awareness and research funding to these diseases so we can save lives! #rarediseaseday #rarediseaseday2024

April is #ParkinsonsAwarenessMonth! We'd like to bring awareness to this complex disease and recognize those who are fighting the battle with it. Learn more from the #ParkinsonsFoundation https://buff.ly/2ULpfXj #ParkinsonsDisease #ABCsofPD #livingPD

As I have stated in little-viewed posts of my own, the "silk purse" that emerged out of the sow's ear of the Pandemic was the acceptance of telemedicine and remote patient monitoring (RPM) by Medicare during the strict isolation period that closed clinics and other edifice-based care centers as a means of controlling the spread of the virus. RPM is not just an intervention to be used post-discharge as required by the Medical Home regulations embedded in the PPACA. It is a proactive, interventional tool that has already been shown to decrease morbidity and mortality in patients with chronic conditions, regardless of their geographic location. Clearly, rural America is the canary in this coal mine and, with the increasing dearth of healthcare providers in this demographic, the risk to quality of life and the determinants of health status is growing by the day. Telemedicine and RPM are, without question, a viable and cost-effective solution to this dilemma with the following speed bumps: 1. Connectivity and reliable hardware. 2. Education and demonstrated technical competence. 3. Patient/family acceptance and buy-in. 4. Adequate reimbursement from third party intermediaries. It is certainly time to move forward!

As it's leap year, the rarest day of the year and rare disease awareness day it seems the appropriate time to speak up and shine a light on my eds community. Diagnosed at a young age (rare in itself with the average diagnosis taking 8 years post GP opinion!) With type 3 hypermobile Ehlers Danlos Syndrome isn't something I talk about often despite it being something that effects me everyday. It's not an easy condition to live with but through careful exercise, diet and the support of my friends, family and community I have developed a strong coping mechanism. Sharing this to raise awareness to the condition, and rare and invisible illnesses, not too bring attention to myself. I pride myself on my strength, and hope most of you would have no clue I have anything medical going on. ____________ For reference and learning: hEDS causes a myriad of symptoms, including skin hyperextensibility and fragility, easy bruising and bleeding, joint hypermobility, subluxation, dislocation, chronic pain and fatigue, digestive problems, eratic heart rate and dizziness. (NHS) #rarediseaseday #heds #eds #awareness

Are you ready to express your BIG movements and LOUD voice during the month of April for PD awareness? This April, organizations around the world join forces in raising awareness for those living with Parkinson’s Disease (PD). Learn how you can get involved: https://hubs.ly/Q02r-qJh0 #parkinsonsawareness

Raising awareness and advocating for change…Today is Rare Disease Day 2024. Everyone has a voice so make yours heard today by clicking the link below, submitting your pre-written letter to your representative(s), and then sharing this post. Today is the last day to do so! Click this link to get started and watch the tutorial on this page for full instructions: https://ow.ly/Pu5u50QHYCO #RareDC2024 #BattenAdvocatesForACure #BattenDisease #RareDisease

"🌟 Today, on #RareDiseaseDay, let's rally behind the superheroes of the rare disease community! Your strength inspires us all. Let's raise awareness, and show unwavering support for those facing unique challenges. Together, we can empower each other and make a meaningful difference. 💪 ❤️ #RareButStrong #SupportHeroes #YouAreNotAlone" #RareButStrong #RaiseAwareness #SupportHeroes"

Living this dream. What a crazy ride when you have invisible challenges and doctors don't listen. It took me nearly ten doctors over multiple years while working to accomplish many other things in pain to learn about my Ehler-Danlos Hypermobility. It took another decade to learn that it was common in Neurodivergent women. I am still learning about the management and its implications and other co-occurring conditions like POTS, Chronic Fatigue, autoimmune conditions, and Fibromyalgia. Like most things, there are degrees to Ehler Danlos; hypermobility is the type with the least harm. It comes with the most significant responsibility to talk about it because others are suffering too much to do so. A name for something makes all the difference; it provides language that makes the invisible visible. We know better now; it's time we do better. Awareness breeds understanding. #ehlersdanlossyndrome #neurodivergent #womenempoweringwomen #invisibleillness #invisibledisability #awareness #understanding #doctors #medical #chronicpainmanagement #POTS #fibromyalgia