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This feed is no longer active or accepting submissions, but we encourage you to check out the posts below which were submitted during February 2024 in support of Rare Disease Day.

Richie Kahn Richie Kahn Canary Advisors

So excited that the countdown to Rare Disease Day has begun! I’m looking forward to attending Rare Disease Week on Capitol Hill in Washington, DC. This important week connects patients, advocates, caregivers, and community members with members of Congress to enact much-needed change to inform policy that impacts patients and families living with a rare disease. Keep your eyes on this page during that week, as we’ll continue to post updates as they occur.

Updated 4 months ago
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/about-us/our-events/tnbc-day/virtual-events-2024
Canary Advisors Canary Advisors Canary Advisors

Canary Advisors

www.linkedin.com/posts/canaryadvisorsllc_raredc2024-rarediseaseday-activity-7163158752681000960-1zXJ
Patrick O'Connor Patrick O’Connor Uplifting Athletes

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

Twins Field

Paula Penney Admin Paula Penney Worldwide

My nephew Steffen was born with a rare genetic disorder -CHARGE Syndrome- 22 years ago. Although he is deaf, blind, and has multiple other issues, he is not medically fragile. Steffen is nonverbal and has Autistic tendencies. Nothing holds Steffen back. Whatever the family does, so does Steffen. Whether it is whitewater rafting, skiing downhill, skating, or a dance video party, Steffen is right there. His laugh and joking nature are a joy to be around. Thanks to great health care providers and interveners/caregivers, Steffens life is full and brings joy and love to all those that know him. His parents are members of the CHARGE Syndrome foundation and provide support to new parents who receive the rare diagnosis of CHARGE. It means everything to talk to someone who has been there. Today is special day for our family. Together we can raise awareness and influence change.

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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!

Deborah Requesens Deborah Requesens Orphan Disease Center

⭐ Today is #RareDiseaseDay! Join us as we #leap4rare to show our support for the 300 million people worldwide living with rare diseases. The Orphan Disease Center is dedicated to advancing research and providing support all year round. Let’s unite in solidarity and make a difference together! #raredisease #supportresearch

www.linkedin.com/posts/orphan-disease-center-university-of-pennsylvania_rarediseaseday-leap4rare-raredisease-activity-7168989114392911873-8ZZs
Trinity Life Sciences Trinity Life Sciences Trinity Life Sciences

Read our latest blog post to learn about the cell and gene therapy trends Trinity Life Sciences is watching for 2024!

Amy Raymond Amy Raymond Worldwide Clinical Trials

This Rare Disease Day, I am thinking about how phenomenal it is to see how rare oncology patients have benefitted from the 6 CAR T treatments now available! It is exciting to watch how continued advancements have turned CAR T into a new development paradigm for autoimmune diseases – looking forward to seeing these additional patient communities benefit from cell therapy!

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