American Liver Foundation’s Post

Today is Rare Disease Day, a time to raise awareness for the millions of people living with rare diseases around the world. Rare diseases affect less than 200,000 people in the US, yet there are over 7,000 known rare diseases that collectively impact over 25 million Americans. Many rare diseases do not have effective treatments or cures, and people suffer without proper medical care, support, or research. On this Rare Disease Day 2024, I stand in solidarity with the rare disease community. Let us continue to advocate for more research, improved access to medical care, and better quality of life for those impacted by rare diseases. With education, funding, and support, we can make a difference. Please consider learning more about rare diseases, donating to organizations that provide critical services and conduct research, volunteering for the cause, and speaking up to reduce the challenges faced by the rare disease community. Together, our voices are strong.

When you become a member of LymeDisease.org, it strengthens our collective voice. Your support enables us to continue providing critical information, advocating for better policies, and driving research that can lead to more effective treatments and, ultimately, a cure for Lyme disease. Join us in this vital mission and help us make a difference in the lives of people affected by this insidious illness. Together, we can bring about the changes we so desperately need. https://lnkd.in/gdWq3ezG

🌟🌈 Rare Disease Day may have been yesterday, but let's remember that our commitment to helping these patients extends far beyond just one day of awareness! 💪🦄 While it's incredible to see buildings lighting up and the world coming together to raise awareness, the challenges faced by individuals with rare diseases persist all year round. Let's remember their resilience and highlight the importance of ongoing support and research for these often overlooked conditions. 🌍💙 Let's make sure that the voices of those with rare diseases are heard loud and clear. 🤝💜 So, what can you do to make a difference? Here are a few simple steps you can take: 1️⃣ Educate yourself: Learn more about rare diseases and the specific challenges faced by individuals living with them. Share your knowledge with others to raise awareness. 2️⃣ Support patient advocacy groups: Donate your time, funds, or resources to organizations that are dedicated to supporting individuals with rare diseases and their families. 3️⃣ Be a voice: Speak up for those who may not have a platform. Share stories, experiences, and information about rare diseases on social media or through other channels to raise awareness and promote understanding. 4️⃣ Advocate for research: Support initiatives that aim to advance research and development of treatments for rare diseases. Reach out to your local representatives and urge them to prioritize funding for rare disease research. 5️⃣ Show empathy and kindness: Be understanding and compassionate towards individuals with rare diseases and their families. Small acts of kindness can go a long way in making a positive impact. Together, we can make a difference and advocate for better resources, research, and support for these individuals and their families. 🤝💜 #RareDiseaseDay #RareButEqual #BeyondAwareness #RareDiseasesMatter #TogetherWeCan #MakeADifference #NeverGiveUp #Resilience #Advocacy #Support #Research #Hope #Community

Today is #RareDiseaseDay! Millions around the world, including 1 in 10 Americans, live with a rare disease. These conditions, while uncommon individually, collectively affect a large and diverse population facing unique challenges. #ShowYourStripes and stand with the rare disease community by: ✴️Raising awareness: Share facts, stories, and resources to help others understand the impact of rare diseases. ✴️Supporting research: Donate to organizations funding research for diagnosis, treatment, and cures. ✴️Advocating for change: Speak up for policies that support the needs of individuals with rare diseases. Together, we can make a difference! #RareDiseaseDay #EveryStripeHasAStory #SeeTheAbleNotTheLabel #SpecialNeedsFamilies #SpecialEducation

Today is #RareDiseaseDay! Millions around the world, including 1 in 10 Americans, live with a rare disease. These conditions, while uncommon individually, collectively affect a large and diverse population facing unique challenges. #ShowYourStripes and stand with the rare disease community by: ✴️Raising awareness: Share facts, stories, and resources to help others understand the impact of rare diseases. ✴️Supporting research: Donate to organizations funding research for diagnosis, treatment, and cures. ✴️Advocating for change: Speak up for policies that support the needs of individuals with rare diseases. Together, we can make a difference! #RareDiseaseDay #EveryStripeHasAStory #SeeTheAbleNotTheLabel #SpecialNeedsFamilies #SpecialEducation

Today is #RareDiseaseDay! Millions around the world, including 1 in 10 Americans, live with a rare disease. These conditions, while uncommon individually, collectively affect a large and diverse population facing unique challenges. #ShowYourStripes and stand with the rare disease community by: ✴️Raising awareness: Share facts, stories, and resources to help others understand the impact of rare diseases. ✴️Supporting research: Donate to organizations funding research for diagnosis, treatment, and cures. ✴️Advocating for change: Speak up for policies that support the needs of individuals with rare diseases. Together, we can make a difference! #RareDiseaseDay #EveryStripeHasAStory #SeeTheAbleNotTheLabel #SpecialNeedsFamilies #SpecialEducation

Hey Everyone!! Did you know that over 322,000 people in Canada are living with some form of inflammatory bowel disease (IBD), and by 2035 that number is expected to grow to 470,000? Crohn’s disease and ulcerative colitis – the most common forms of IBD - are chronic, lifelong diseases that affect the gastrointestinal tract and cause extreme pain, the need for surgical intervention, intensive medication regimens, and more. Having been affected by Ulcerative Colitis myself, I know how important it is to invest into research, community programs, advocacy, and more. Whether you’ve experienced the detrimental effects of Crohn's disease or ulcerative colitis either firsthand, through a loved one, or by caring for your patients. There are several ways to help make a difference for people living with IBD. Through monetary donations or by volunteering your time and skills, you can make a significant and lasting impact on critical research, education, and support programs. Feel free to show your support by attending the Gutsy Walk on June 2nd 2024 or by donating through the link below. A little goes a long way! :)

Today, 2/29 is rare disease day. 50% of people living with a rare disease are children, and because these conditions are rare, data is limited, and funding for research into treatments and cures is scant. Before our 5-year-old was son was diagnosed in 2019, I had never heard of Chronic Pancreatitis, a condition which ravages the pancreases leading to ever increasing degeneration of the organ. There is no cure and treatment options are shockingly limited. As a UX Researcher, I often note that when you're looking at statistics, it's essential to remember that those numbers represent people. And that's never truer than when we talk about rare diseases. 0.03% of Children suffer from pancreatitis. It's a small number on a global scale. Too small to scare up much funding or attention. But that 0.03% represents children with hopes, and dreams, friends, and family, and children who are suffering. So on this day, rare disease day, I just want to pause for a moment to recognize that if a disease effects 1 person or a million people, it still matters. #MyPurpleStripes #pancreatitis #rarediseaseawareness

Collaboration is essential to overcoming patient recruitment challenges and advancing the creation of groundbreaking treatments for rare diseases. To combat rare diseases, IndoUSrare advocates a global approach, fostering cross-border collaborations and pioneering patient engagement strategies to fight rare diseases. Together, we can bridge gaps and foster a more inclusive future for the rare disease community. Source:- https://lnkd.in/gAH8VZxY For more information, please Connect with us: https://lnkd.in/gEQqd9jG Let your donations make a meaningful impact click here: https://lnkd.in/gakZNAw8 Harsha K Rajasimha Indo US Organization for Rare Diseases (IndoUSrare) Reena Kartha Ramya T karur Nisha Venugopal Narayanan Govindarajan #ClinicalTrialsChallenge #GlobalHealthAdvocacy #RareDisease #bridgingrare #bridge4rare #IndoUSrare #RareDiseases #Healthcare #RareDiseaseCommunity #RareDiseaseResearch

Thousands of Americans will receive a devastating kidney disease diagnosis this year – news that will forever change their life. But thankfully, there are family members and caregivers to lean on, and a supportive community of dedicated champions leading the way forward – everyday heroes doing all they can in the fight against kidney disease. That’s what #KidneyHeroesGivingDay is all about. Honor your hero: https://bit.ly/4dPSota Thanks to a group of generous, supporters, your first monthly gift will be matched dollar for dollar, up to $20,000 meaning your impact on lifechanging research, advocacy and treatment will be DOUBLED. We can’t bring an end to kidney disease in a single day, but every gift is a step forward and a step closer to the next lifechanging breakthrough. Show your support and honor your hero before midnight: https://bit.ly/4dPSota