The Rare Moments

See what’s been shared

That’s a wrap for now!

This feed is no longer active or accepting submissions, but we encourage you to check out the posts below which were submitted during February 2024 in support of Rare Disease Day.

Updated 4 months ago
Patrick O'Connor Patrick O’Connor Uplifting Athletes

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

Twins Field

Rob Long Rob Long Uplifting Athletes

In celebration of Rare Disease Day, I am excited to share our most recent draft class from the 2024 Young Investigator Draft! This year we highlighted the significant potential of research in this space when powered by the platform of sports—especially as we surpassed our $1 million in total funding granted. You can watch a recap of the event at the below link!

Jill Kiernan Jill Kiernan Tatton Brown Rahman Syndrome (TBRS)

This year for Rare Disease Day the Tatton Brown Rahman Syndrome (TBRS) Community is celebrating our many accomplishments from 2023! We are building on that momentum in 2024 with additional research into TBRS biomarkers and continuing to enroll samples into our TBRS biobank. Read more and celebrate with us here:

A Year of Triumph: How the TBRS Community Transformed Support Into Action in 2023
Patrick O'Connor Patrick O’Connor Uplifting Athletes

Nick Allegretti won his 3rd Super Bowl ring this past weekend as a member of the Kansas City Chiefs! Nick is an advocate for the rare disease community through his work with Uplifting Athletes, where he is currently an active Board Member.

International Autoimmune Encephalitis Society International Autoimmune Encephalitis Society International Autoimmune Encephalitis Society

The International Autoimmune Encephalitis Society (IAES) is the only family/patient-centered organization for people with a diagnosis of Autoimmune Encephalitis. The services we provide are all-inclusive, from getting a diagnosis to recovery and the many challenges experienced on that journey. IAES provides science-based information backed by trusted medical experts in the field of autoimmune neurology and relies on the expertise of our Medical Advisory Board. We are an established non-profit organization with a history of supporting Autoimmune Encephalitis Warriors (patients, caregivers, and families) through their journey from diagnosis to recovery.

International Autoimmune Encephalitis Society

Dave Bowser Admin Dave Bowser Worldwide Clinical Trials

I’m amazed with the technologies used to treat patients living with a rare disease, including gene-based therapeutics. These drugs often target the underlying cause of the disease. One example of this is Casgevy, which was approved to treat patients with sickle cell disease in December 2023 and was recently approved for patients with beta-thalassemia in January 2024. I look forward to seeing more of these treatments throughout 2024.
Derek Ansel Admin Derek Ansel Worldwide Clinical Trials

We are so excited to launch Rare Moments, our website dedicated to sharing updates from the rare disease community throughout the week of Rare Disease Day. Please share your memories, notes, events, thoughts, and resources during this week so that we can help elevate each other’s voices. So much happens during Rare Disease Week, so favorite this page and visit often to stay current on all things Rare Disease!

We live for the rare moments.