The Rare Moments

See what’s been shared

Share Your Rare Moments

Your email address will not be published. Required fields are marked *

Disclaimer: Not all posts submitted will be able to be featured. If your post is selected, it will appear on the feed in February.

Comment is submitted and it is waiting for a review

Amy Getman Amy Getman Worldwide Clinical Trials

On this Rare Disease Day, I pause and give gratitude to all those in our community who help move the needle in researching and fighting Rare Diseases. A very close friend of mine was diagnosed with NMO (Neuromyelitis optica) several years ago and fortunately has found a medicine that has kept her in remission from relapses. She goes every two weeks for an infusion and will continue this for the rest of her life. It amazes me the resilience and positive attitude she carries with her in the face of this terrible rare disease. I love working for a passionate organization that helps companies execute Rare Disease trials in hopes of finding new treatments for these patients!

Updated 3 hours ago
Amy Raymond Admin Amy Raymond

With Rare Disease Day coming up, I’m reflecting on the continued innovations in CAR T treatments for rare oncology patients over the last few years. The global research community launched a record number of CAR T clinical trials in 2024, gaining momentum while building on the strength of several approved CAR T treatments. I’m excited to see these treatments now developed for rare patient communities outside of oncology and looking forward to being part of setting these new standards of care.
 
Find out more about bringing CAR T to new clinics in my on-demand webinar: 

www.worldwide.com
Worldwide Clinical Trials Worldwide Clinical Trials Worldwide Clinical Trials

Hear from Nathan Chadwick, Senior Director and Therapeutic Strategy Lead for Rare Disease.

youtu.be
Juliane Mills Admin Juliane Mills Worldwide Clinical Trials

We work in a way to make the data in clinical trials meaningful to the community. I recently had the honor of hosting a webinar to learn about endpoints that are meaningful to patients and their families living with developmental and epileptic encephalopathies (DEE). Check it out here!

youtu.be
Derek Ansel Admin Derek Ansel Worldwide Clinical Trials

We are so excited to re-launch Rare Moments, our website dedicated to sharing the stories and experiences of the rare disease communities throughout the month of February in honor of Rare Disease Day. Please use this safe space to share your memories, notes, events, thoughts, and resources so that we can help elevate each other’s voices and connect like-minded individuals. So much happens during and ahead of Rare Disease Week, so bookmark this page and visit often to stay current on everything rare disease!

Worldwide Clinical Trials Worldwide Clinical Trials Worldwide Clinical Trials

We’re excited to relaunch Rare Moments—a space to share updates, events, and resources throughout the month of February. Join us in amplifying voices and stay connected by bookmarking the page!

Juliane Mills Juliane Mills Worldwide Clinical Trials

That’s a wrap (for now)!

Our goal in creating this page was to provide a forum for everyone who supports rare diseases to connect and share insights from within their community, so that we can all learn from each other. Generally speaking, industry might use LinkedIn as a communication outlet, researchers frequently use Twitter, and patients and advocacy groups often use Facebook. There is no one platform that is available to all people who are invested in rare disease research.

That is why we created Rare Moments: to bring together all the voices and inspire sharing of resources and collaboration.

Thank you to everyone who participated in this effort. We are grateful to you for sharing your thoughts with the wider rare disease community.

Nisha Trivedi Nisha Trivedi

I had such a fulfilling experience visiting my members of Congress as part of Rare Disease Week on Capitol Hill. My fellow advocates and I raised our voices to encourage their support of policies that benefit rare disease patients. Hearing everyone’s stories was so inspiring.

Sara Davis Sara Davis Worldwide

We are proud to support and bring awareness to Triple Negative Breast Cancer Day which was yesterday, March 3rd. Individuals in the United States have a 1 in 8 chance of developing breast cancer and TNBC accounts for 10-25% of those breast cancers. Me and many others at Worldwide are excited to take part in the many events occurring throughout March that bring awareness to this disease. Please join us at any of the highlighted events listed below.

tnbcfoundation.org
Canary Advisors Canary Advisors Canary Advisors

Canary Advisors

www.linkedin.com
Patrick O'Connor Patrick O’Connor Uplifting Athletes

Check out the Minnesota Twins’ Target Field lit up for Rare Disease Day!

Twins Field

LOAD MORE

We live for the rare moments.