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When Molly met Jill: Rett Connection Becomes Fast Friendship

Friday, November 8, 2019

— Becky Sher Molly Prichard jokes that she and best friend Jill Black met “online dating.” And to hear them talk about their fast friendship does sound like a conversation about Internet matchmaking — they mention instant connections, plans to meet in person after finding each other online, and even family members’ concerns that the … Read More

Collage of rett patients

Unwavering in Our Mission

Thursday, October 31, 2019

Rett Syndrome Awareness Month has been incredible. As a community, you rallied like never before – speaking out to share the good, the bad, and the ugly about Rett syndrome to educate the world and move the needle. Your efforts continue to make a difference. Today, more people know about Rett syndrome than ever before … Read More

Acadia pharmaceutials

ACADIA Announces Launch of Phase 3 LAVENDER Study for Trofinetide

Wednesday, October 30, 2019

Dear Rett Community, Today we took a significant step forward with the trofinetide clinical development program initiating the pivotal Phase 3 LAVENDER study. As we have shared before, LAVENDER is a 12-week study that will evaluate the efficacy and safety of trofinetide versus placebo in approximately 180 girls and young women aged 5 to 20 … Read More

Dr. Dominique Pichard

Rettsyndrome.org Announces New Chief Science Officer with Rett Syndrome Connection

Tuesday, September 17, 2019

The International Rett Syndrome Foundation (doing business as Rettsyndrome.org) has officially welcomed Dominique Pichard, MD to the organization as their new Chief Science Officer. A highly accomplished clinician and researcher, Dr. Dominique Pichard brings years of hands-on experience conducting critical work in clinical trials with the National Institutes of Health (NIH), pharmaceutical companies, and the … Read More

Little girl with rettsyndrome

You are not alone

Monday, April 29, 2019

Did your child recently receive a Rett syndrome diagnosis? You are not alone. Rettsyndrome.org meets you at diagnosis and helps you through every facet of this unexpected journey. Our mission is to accelerate research toward treatment and a cure, but we are also committed to empowering families. It’s essential that families are equipped with information, … Read More

We’re Hiring!

The International Rett Syndrome Foundation (IRSF) is looking for a passionate storyteller and marketer to advance our mission of accelerating research and empowering families affected by Rett syndrome.

 

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