{"id":20407,"date":"2022-12-04T12:02:24","date_gmt":"2022-12-04T18:02:24","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/ecd-staging\/?p=20407"},"modified":"2025-08-23T17:13:58","modified_gmt":"2025-08-23T21:13:58","slug":"2022-ecd-global-alliance-annual-newsletter","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/2022-ecd-global-alliance-annual-newsletter\/","title":{"rendered":"Lettre d'information annuelle 2022 de l'Alliance mondiale ECD"},"content":{"rendered":"

\"\"<\/a>Sharing a year of hope with the ECD community!<\/h2>\n

View the 2022 Year-End Newsletter.<\/a><\/strong><\/p>\n

Over the past two years, the ECD Global Alliance adjusted to the new norms of distancing and travel bans with more online connections<\/strong> and smaller, regional meetings<\/strong>. We have launched a Navigateur patient<\/a> Program<\/strong> to help guide patients one-on-one through the process of finding the right doctors, treatment access and coverage, and peer support.\u00a0 Our continued support of the research community has led to the second FDA-approved drug<\/strong> for ECD, cobimetinib. Not to mention nearly one million in research <\/strong>has been funded from our grant program toward ECD projects thus far, with an additional $450,000<\/strong> in the pipeline.\u00a0 International ECD Care Centers<\/strong> continue to be identified and added to the network to bring expert care to patients and consultations to physicians less knowledgeable about the disease.<\/p>\n

After the Annual Patient & Family Gathering and Medical Symposium was put on hold during the pandemic, we are finally able to offer this live meeting on April 27-28, 2023!\u00a0 Find out more about this event here.<\/a><\/p>\n

As we reflect on the trials and triumphs of our community members, we want to thank the supporters that come through for those living with ECD every single day.<\/strong>\u00a0 Your support is not just about your loved one, but about the future of all families faced with Erdheim-Chester Disease.\u00a0 Your provisions have come in all forms, and we appreciate everything you do!<\/p>\n

The ECD Global Alliance is reaching new levels of support for those living with Erdheim-Chester Disease with a matching gift campaign through December 31, 2022<\/strong>!\u00a0 Thanks to a challenged $11,000 matching gift<\/strong> from generous ECDGA Board members and benefactors \u2013your impact on our critical work will go TWICE as far.<\/p>\n

With your donation, we can make the future brighter for all who have been affected by ECD. Please make a gift today to strengthen our work in the year ahead\u2026and know you will do twice the good! \u00a0Double Your Gift Today!<\/a>\u00a0<\/strong><\/p>\n

What your gift provides:<\/p>\n