Newsletter Archive

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Prof. Kleefstra Recruited to New Hospital, Upcoming Opportunity Outside of Philadelphia for Research

April 23, 2023

Celebrate Rare Disease Day, the Importance of ICD-10 Codes, ACE Fundraising Initiative

February 25, 2023

Eat Justice Initiative, Marco Island Academy Supports KS , New Sleep Study Announcement

December 17, 2022

Investment in Cell Lines, a Global Genes Conference Recap, a New Approach for Gene Therapy Programs

October 19, 2022

Kleefstra Clinic at Sydney Children's Hospital, Kleefstra Syndrome Awareness Day Campaign, and Big News!

August 17, 2022

Ultragenyx Rare Bootcamp, Southern Roots Wrap Up, and IDefine the Future Podcast

May 20, 2022

Meet the Gene Fixers, Recognize Rare Disease Day with a Zebra print, and a Save the Date!

Feb 18, 2022

Internationally-known speech therapist may target KS

Jan 19, 2022

Newsletter November 2021

Nov 20, 2021

Passionate, experienced KS grandparent assumes leadership of Kleefstrasyndrome.org

Sep 16, 2021

Data and parents will be the key to a cure, says KS mom, researcher

Jul 16, 2021

The importance of biorepositories, an opportunity for a KS biorepository, and meet IDefine's new director of development, and more

May 20, 2023

IDefine Europe Connects Communities, 5K for KS, and a New Report on Rare Disease Developments

March 22, 2023

The Importance of Being Counted, Message from the Chief Scientific Officer, 2022 Impact Report.

January 21, 2023

Brianna's Brigade Marches On, Giving Tuesday Approaches, Kleefstra Syndrome Speech + Language Study Update

November 18, 2022

IDefine's two-year anniversary, evaluating neurodevelopmental disorders for gene therapy, 42-year-old rabbi diagnosed!

September 17, 2022

North American Kleefstra Syndrome Family Conference Recap, Dr. Britt Mossink Awarded for Thesis on EHMT1!

July 16, 2022

Kleefstra Syndrome Research Update, The Worldwide Map, an International Study Opportunity, and More!

June 17, 2022

GI symptoms in KS, other disorders to get candid analysis

Apr 15, 2022

Scientific Conference this week

Mar 22, 2022

Island Community Rolls Up BIG Support for KS

Dec 21, 2021

Rise Above

Oct 21, 2021

Maryland mom shares story of struggles as daughter ages

Aug 13, 2021

Meet Paul Smith — KS Dad and Scientific Advisor to IDefine

Jun 18, 2021