By Melanie Kretas / artwork by Ava Rare Disease Day Reflection I đRUFFđsomeone rare! Rare comes in all different shapes and sizes, same with best friends! Ava loves the company of her two best friends, Hero and RangerđŸShe enjoys walking them, playing with them and feeding them. They make her laugh every single day!...
Continue readingNotre petit soleil
by AurĂ©lie Aujourdâhui est une journĂ©e de sensibilisation aux maladies gĂ©nĂ©tiques rares.. Nous ne nous Ă©tions jusque lĂ jamais rĂ©ellement intĂ©ressĂ©s au sujet.. Nous ne savions pas Ă lâarrivĂ©e d Helio que nous vivrions un vĂ©ritable combat avec et pour lui.. Un combat quotidien qui a dĂ©marrĂ© dĂšs ses 9 mois avec des heures,...
Continue readingLove Needs No Words
By Amber Reynolds As we started to learn more and more about Harperâs diagnosis, Okur-Chung Neurodevelopmental Syndrome, we started to understand that our precious nonverbal daughter, Harper, might never learn to speak. One of my saddest moments as a mom was thinking I may never hear my daughter tell me she loves me. Harper...
Continue readingReflection of OCNDS parent on Rare Disease Day 2021
By: Claire Whitehill âThe future is a mystery, but as long as she is happy and healthy that is good enough.â Early days Kirsty was born 7 weeks early due to Strep B and spent the first 3 weeks in the Special Care Baby Unit with an NG tube. She went back into hospital...
Continue readingRare Disease Day 2021 Cooking Class with The Color-Coded Chef
âBaking is done out of love, to share with family and friends, to see them smile.â JOIN US! Letâs make chocolate chip cookies together! CSNK2A1 Foundation is proud to host a Rare Disease Day 2021 Event. Please REGISTER for a FREE online cooking class with The Color-Coded Chef on Sunday, February 28th, 10am Central....
Continue readingRare Disease Day 2021 Save the Date
Please join us and participate in Rare Disease Day 2021. No action is too small. What is Rare Disease Day? Rare Disease Day is the official international awareness-raising campaign for rare diseases. Rare Disease Day takes place on the last day of February each year. This year it is Sunday, February 28th. What is...
Continue readingToday, December 1st, is Giving Tuesday!
Today, December 1st is Giving Tuesday, a global day of giving. âYour spark can become a flame and change everything.â E.D. Nixon Be The Spark for those living with OCNDS. Give a Gift of Hope today. There are limitless ways to give. Today, give the gift of hope by SHARING this video on Facebook,...
Continue readingPresident, Jennifer Sills profiled by Global Genes
We are a proud member of the Global Genes Foundation Alliance. Global Genesâ mission is to connect, empower and inspire the rare disease community. As an Alliance Foundation, we have the opportunity to collaborate and exchange best practices with other rare disease organizations to drive better outcomes for the rare disease community. Global Genes...
Continue readingWe are excited to launch our Parent Education Webinar Series
We are excited to launch our Parent Education Webinar Series. As parents and patients try to navigate a new diagnosis, they can be overwhelmed with information. We want to provide informational videos to help parents and patients navigate their rare diagnosis and inform them about different types of interventions available. Our first webinar is...
Continue readingShare the Joy of Giving!
SHARING IS CARING! There are so many ways to share the love of giving to help us find a cure and make a meaningful change in the lives of individuals affected by OCNDS. Did you know that you can donate your birthday by creating a Facebook fundraiser? It is as easy as one click...
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