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.
The Rare Moments
You know those rare moments that give you goosebumps? The ones that provide a new perspective, connect two ideas in a way you’ve never considered before, or just really hit home?
For Rare Disease Day this February, you’ll find a curation of those moments here — The Rare Moments. Patients, families, researchers, and people working to advance rare disease treatments will be using this space to pass on their goosebump moments. From past moments, to the significant highlights of the 2024 Rare Disease Week and Rare Disease Day, and even hopes for the future, here you will find diverse and valuable insights that matter to our community and expand our reader’s understanding of what it means to live with and work with rare diseases.
Be sure to check back regularly throughout the month to catch the latest posts and submit your Rare Moment for consideration!
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This feed is no longer active or accepting submissions, but we encourage you to check out the posts below which were submitted during February 2024 in support of Rare Disease Day.
Resources
Incorporating the Patient’s Voice
White Paper
How To Build Mutually Beneficial Relationships with Advocacy Groups
Insights
How Worldwide and Every Cure Are Using AI To Unlock New Rare Disease Treatments
Insights
Meet Your Rare Disease Team
Fact Sheet
Rare Disease Day
rarediseaseday.org
Glut1 Deficiency Foundation | Research Compass
g1dfoundation.org
Workshop: Qualifying Biomarkers to Support Rare Disease Regulatory Pathways
reaganudall.org
Galactosialidosis Network
galactosialidosis.org
Every Cure
everycure.org
Uplifting Athletes
upliftingathletes.org
We live for the rare moments.
Thank you for sharing and reading this curation from our rare disease community!
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.
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-2024TNBC Day | Triple Negative Breast Cancer Foundation
Every day in March is TNBC Day! Triple Negative Breast Cancer Day is the only global event dedicated to raising both awareness and funds exclusively for triple negative breast cancer. Find out how you can get involved!
tnbcfoundation.org
www.linkedin.com/posts/canaryadvisorsllc_raredc2024-rarediseaseday-activity-7163158752681000960-1zXJCanary Advisors® on LinkedIn: #raredc2024 #rarediseaseday
Next up, we'd like to introduce you to Carolina Consuegra, a wonderful advocate and talented medical writer. Science2People #RareDC2024Â #RareDiseaseDay.
www.linkedin.comCheck out the Minnesota Twins’ Target Field lit up for Rare Disease Day!
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.
The CHARGE Syndrome Foundation
A better world for people with CHARGE Syndrome.
www.chargesyndrome.orgOn 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!
⭐ 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-7168989114392911873-8ZZsOrphan Disease Center | University of Pennsylvania on LinkedIn: #rarediseaseday #leap4rare #raredisease #supportresearch
â Today is #RareDiseaseDay! Join us as we #leap4rare to show our support for the 300 million people worldwide living with rare diseases. The Orphan Diseaseâ¦
www.linkedin.comRead our latest blog post to learn about the cell and gene therapy trends Trinity Life Sciences is watching for 2024!
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!
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!