The Myositis Association

While Rare Disease Day is only a day, we may spend a week highlighting and advocating for in hopes of driving awareness, treatment, and equality. Most of our conditions are invisible, but we live with daily reminders. It takes organizations like The Myositis Association and Myositis Support and Understanding Association, Inc. (MSU) to help patients with conditions similar to mine find their voices and speak their truth in awareness. Rare Disease Day is not just a day for most but a lifelong journey of advocacy, understanding, and supporting others in hopes of one day reducing the impact and finding a cure. Join me and others in helping them share their stories, find their voices, and fight for treatment and support. Our journeys and stories are unique. While we might have the same diagnosis, our stories, trials, and conditions are different, and the same holds for our treatments. #myositisstrong #myositiswarrior #iamrare #speakyourtruth #rarediseaseday

This is your final chance to bring together myositis patients and their families attend the International Annual Patient Conference! Your gift makes it possible for patients to attend this life-changing event, where they find connection, support, and lifelong friendships. Now is your chance to support those living with myositis on #RareDiseaseDay! Donate today! https://lnkd.in/esUvcbNX #Myositis #MyositisWarrior #MyositisAwareness #TheMyositisAssociation #MyositisSupport #RareDisease #MYOMovement #MyositisLife #MyTMA #PatientAdvocacy #TheMyositisAgenda

For those who are not affected by rare diseases, today is National Rare Disease Day... except that the federal government has 'postponed' observing the day without clear rationale. Let me be clear - Rare disease research matters. Celebrating victories, perseverance, and advocacy efforts matters. Funding rare disease research is not superfluous spending... it deeply impacts people's lives and their families. People > money. Thank you to The Myositis Association for offering We Care For Rare Summit, and for supporters and guest speakers from Myositis International Health & Research Collaborative Alliance, Nori's Fight, and National Organization for Rare Disorders. Thank you to Julia Nickerson with Nori's Fight and Lindsay Guentzel for your #storytelling, #advocacy, and #grit. "Remember, alone we are rare, together we are strong." -Alli Ward, NORD #WeCareForRare #RareDiseaseDay #FundRareDiseaseResearch #advocacy #federalspending #togetherwearestrong #spoonies #nonapparentdisabilities #disabilities #disabled

???? Today is #RareDiseaseDay, a time to shine a light on the 300 million people worldwide living with a rare disease. Rare Disease Day, is a global movement that raises awareness and advocates for better access to diagnosis, treatment, and resources. NORD (National Organization for Rare Disorders) is the official U.S. partner for Rare Disease Day. It’s a reminder that while each rare disease may affect a small population, together, the rare disease community is strong, resilient, and deeply connected. This week, I had the privilege of gathering with incredible advocates and leaders at the NORD Member Reception on February 26, hosted by Goodwin Law. The energy in the room was inspiring, as member organizations came together to share ideas, collaborate, and reaffirm our commitment to supporting those affected by rare diseases. I was also deeply honored to speak at The Myositis Association's We Care for Rare Summit, where passionate individuals and organizations are working tirelessly to make a difference for those living with myositis and other rare conditions. Every conversation, every connection, and every step forward strengthens our collective impact. Today, and every day, let’s continue to raise our voices for the rare disease community! Alone we are Rare, Together we are Strong. #RareDiseaseDay #ShowYourStripes #WeCareForRare

You don't have to walk the myositis journey alone. TMA's weekly Virtual Support and Affinity Groups connect you with a supportive community that understands. Whether it's TMA Adelante! for Spanish speakers or the Flying Solo group, there's a space for everyone to feel seen and supported. Find your group today! https://lnkd.in/eN2N7HMd #Myositis #MyositisWarrior #MyositisAwareness #TheMyositisAssociation #MyositisSupport #RareDisease #MYOMovement #MyositisLife #MyTMA #PatientAdvocacy #TheMyositisAgenda

How do you navigate your rare? TMA asked you to tell us what you and your family do to manage your rare medical journey in myositis, and of course you came through with dozens of suggestions for overcoming isolation, connecting with others, making your rare experience easier, and encouraging words. Take a look at this helpful collection of resources. https://lnkd.in/ehxWdRwA #RareDiseaseDay #Myositis #MyositisWarrior #MyositisAwareness #TheMyositisAssociation #MyositisSupport #RareDisease #MYOMovement #MyositisLife #MyTMA #PatientAdvocacy #TheMyositisAgenda

Join us today for We Care for Rare Summit: Celebrating Myositis Science and Rare Patient Stories, 1-3 PM ET / 10-12 PM PT with Virtual Happy Hour from 3-4 PM ET/ 12-1 PM PT, in partnership with Myositis International Health and Research Collaborative Alliance (MIHRA), and Nori's Fight. https://lnkd.in/e_df7cJE #RareDiseaseDay #Myositis #MyositisWarrior #MyositisAwareness #TheMyositisAssociation #MyositisSupport #RareDisease #MYOMovement #MyositisLife #MyTMA #PatientAdvocacy #TheMyositisAgenda

TMA attended the NORD Reception in Washington, DC, with Alli Ward, NORD Director and today's closing speaker at the We Care for Rare Summit! TMA has been a proud NORD member since 1993—when they helped us find our very first 16 members. Grateful for this partnership and all we've built together! There is still time to join the summit - RSVP now! https://lnkd.in/e_df7cJE #RareDiseaseWeek #MyositisCommunity #WeCareForRare #Myositis #MyositisWarrior #MyositisAwareness #TheMyositisAssociation #MyositisSupport #RareDisease #MYOMovement #MyositisLife #MyTMA #PatientAdvocacy #TheMyositisAgenda

TMA Hosts Patient Stories on Rare Disease Day - Read the full press article to learn more!

Share your myositis stripes at TMA's virtual happy hour during the "We Care for Rare" summit today! There is still time to RSVP, but don't wait - the summit starts at 1 PM ET/ 10 AM PT. https://lnkd.in/e_df7cJE #Myositis #MyositisWarrior #MyositisAwareness #TheMyositisAssociation #MyositisSupport #RareDisease #MYOMovement #MyositisLife #MyTMA #PatientAdvocacy #TheMyositisAgenda