PATIENTS' DATA POWERING PROGRESS

RARE-X on Rare Disease Day 2021

This day, this week, this month has served as an essential connecting point for rare disease patients and families and those committed to supporting them. Over the last decade, this unifying time of year provides an opportunity for our community of patients, caregivers, patient advocates, researchers, medicine developers, government, philanthropists, and those that #careaboutrare to come together as one. To rally around each other, to lift each other up, to celebrate the successes, to mourn the losses, but most important . . . to inspire each other to keep going. . . to keep up the fight . . . to keep creating forward movement, for those we love today, and for those that will come after. Rare Disease Day is when we can pause, reflect, and encourage others to join this vital effort.

While new as an organization, all of us at RARE-X are not new to this fight and this community. RARE-X has brought forward many friendly and recognizable faces, those who have been committed advocates, have been funding research, have been building rare disease companies, developing extraordinary technology, and funding new therapies. We at RARE-X understand that it takes all of us – an ecosystem – of committed individuals to create impact and support this community of 9,500 rare diseases and over 400 million people globally.

We are an ally, we are in this fight, and we are focused on making things easier, less burdensome, and more inclusive for our friends and families impacted by rare disease.

If you don’t already know us, we welcome you to do so. . . contact us. . . we are happy to speak. Please reach out if you have questions; we will always communicate with openness, honesty, and transparency.  There is much work to be done.  So many individuals and families need support and rely on all of us to stay the course. And you can be assured that we will do just that. . . dig in and stay the course. . . we are all in this together.

Know that we are grateful for your work, your commitment, your dedication, your impact, your stories, your gifts of friendship and camaraderie, for this is what inspires us every day.

From All of Us at Team RARE-X

 

Share on facebook
Share on Facebook
Share on twitter
Share on Twitter
Share on linkedin
Share on LinkedIn
Share on email
Share via Email
Translate »