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FibroBiologics Files Patent For Novel Approach to Modulate Mitochondrial Activity Using Fibroblast-based Therapeutics

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CURE GABA-A | Amber N. Freed the founder of Slc6a1 Connect and the CURE GABA-A Chief Operating Officer participated in the Lainey Moseley movie Too Rare 2 Care.

🎬 .moseley

Lainey Moseley has given the Rare Disease Community a powerful voice with her film, “Too Rare To Care”.

This movie is a gut-wrenching yet hopeful journey that sheds light on the realities of living with a rare disease.

As a community, let’s come together and amplify our message. Just as advancements have been made in treatments for HIV/AIDS and cancer, we can push for the same progress in rare diseases. Our children deserve a better future.

Please share, follow Lainey and the film at www.TooRareToCare.com

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Another great blog post with a “nanny” perspective

Nanny Care and Support: A Parent's Ally in Chromosomal Deletion Syndrome Caring for a child with chromosomal deletion syndrome can be challenging, but it's also incredibly rewarding.

Check out our newest blog post written by our own Nancy Hellman about her experiences as a physical therapist with Olivia and Wolf Hirschhorn Syndrome.

A Physical Therapist Perspective on Wolf-Hirschhorn Syndrome Olivia's JourneyHer name is Olivia. Initially a new referral, she now resides permanently in my heart. No, I am not her parent, grandparent, or aunt; I was her physical therapist for four and a half years.Before Olivia, I had never worked with such a tiny infant other than in the NICU (neonatal inte...

Yesterday was a great day! Liv4TheCure was invited to Willowbrook Golf Course for The Smitty Memorial Golf Tournament. Each year Liv4theCure is a beneficiary of donations from the event. As an added bonus Olivia and Landon (both diagnosed with WHS) got to see each other after 5 years!

Our March Blog post is out!

Adding Siblings to a Family with A Deletion Diagnosis The DecisionOlivia was our firstborn. I know that each family has different scenarios in which their affected child may be firstborn, the only child, or somewhere in the sibling hierarchy, and the introduction of a child with a genetic deletion affects each family differently.When Olivia was born, I...

Today is such an important day for everyone in the rare disease community! Show your support by wearing your stripes!

We are so excited to have Saurabh Sharma join the Liv4thecure board of directors! You can learn more about him on our website: https://www.liv4thecure.org/board-of-directors-1

Check out our January blog post!

Charting a New Path: Navigating Life After a Genetic Deletion Diagnosis with Liv4TheCure A new year is often a defining moment or a catalyst for a major life change. It has significance in how our lives are marked and referenced. We often recall events by the year in which they occur. Similarly to the start of a new year, the day your child is diagnosed with a genetic deletion syndrome....

https://rarediseases.org/10-ways-to-show-your-stripes-this-rare-disease-day/

10 Ways to Show Your Stripes this Rare Disease Day! - National Organization for Rare Disorders The zebra, with its distinctive stripes, is the official symbol of rare diseases in the United States. While each of the more than 7,000 rare diseases is

Check out our new blog post!

Make A Wish During this holiday season, most of us will spend time gift-giving and sharing delicious feasts with family and friends. These priceless moments get repeated yearly without ever imagining them differently. So how does it feel for individuals facing a rare condition and their families? They see the y...