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Latest News

The International 22q Foundation takes our role as a non-profit organization very seriously to help share credible information to help slow the spread of the coronavirus (COVID-19) and help protect the communities we serve.

Although all in person events have been “postponed” in accordance with recent guidelines, the International 22q Foundation will still be here on line, for any questions you may have, and staff is working from home, to provide the most up-to-the-minute information.

In these difficult times, please know that we are here for you–and your families — please be safe and stay healthy — and keep in touch with us!


Your International 22q Foundation Team

Children’s Hospital of Philadelphia “22q11.2 – Care During COVID-19 Symposium”

GREAT NEWS! If you missed Children’s Hospital of Philadelphia’s “22q11.2 – Care During COVID-19 Symposium,” we are making it available to our International 22q Foundation families now — see the link below!

This informational symposium coincided with 22q11.2 Worldwide Awareness Day on November 22, 2020 (22/11 in Europe) and Shining a Light on Chromosome 22q11.2 by illuminating monuments Red, across the world, including monuments around CHOP that evening in Philadelphia — Boat House Row, the Franklin Institute, and the Roberts Pediatric Research Building along the Schuylkill River!

The presentation lasts about 4 hours – you can check out a list of the presenters and their timing on the video here.

  • Setting the Stage: Donna M. McDonald-McGinn, MS, CGC, Director, 22q and You Center
  • One Patients Perspective on 22q11.2 Awareness Day – Storming Pennsylvania: Hannah Schilling
  • Managing Anxiety, ADHD and Headache: Madeline A. Chadehumbe, MD
  • Generalized Behavioral Challenges: Raquel Gur, MD, PhD
  • Remote Speech and Language Therapy: Cynthia B. Solot, MA CCC-SLP
  • Integrative Approaches to Managing Stress: Maria R. Mascarenhas, MBBS
  • Coping with Immunodeficiency: Kathleen E. Sullivan, MD. PhD
  • Moving Forward Together: Donna M McDonald-McGinn, MS, CGC

During this difficult time, the 22q11.2 Society would like to send you the following video message.

Important Videos about COVID-19

The following videos are made by 22q11.2 Scientific & Clinical Advisor Board of International 22q11.2 Foundation, Chair of Allergy and Immunology at the Children’s Hospital of Philadelphia, and Professor of Pediatrics at the Perelman School of Medicine of the University of Pennsylvania, Kathleen Sullivan, MD, PhD.

If you have any concerns about COVID-19 or any aspects of your health, please check with your healthcare provider.

Please visit the website of the Immune Deficiency Foundation for more information.

Video Updates:

American Heart Association

Low risk of COVID-19 infection found among people with congenital heart disease can be viewed here.

The International Patient Organization on Primary Immunodeficiencies

Published an updated Joint Statement together with ESID, INGID, APSID, ARAPID, ASID, CIS, LASID, SEAPID and now also IUIS on the COVID-19 epidemics.COVID -19 – April 8, 2020

Disclaimer: This information is brought to you by the Foundation for educational purposes only. It is not intended to be taken as medical advice. If you have concerns, please talk to your healthcare provider.

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At the International 22q11.2 Foundation we help families that need important resources and information to meet the needs of loved ones with 22q.