Press Kit

Press kit and support for May 16 as the annual World Congenital Disorders of Glycosylation (CDG) Awareness Day


Advocating for CDG to government leaders: we really want to encourage everyone in our patient community to email, mail a letter or call their elected officials to address some concerns of our rare disease community. Soon we will have a template letter for this purpose.

Template letter for Government and Media

Goal: Write your government representatives and Media to explain why CDG and related rare diseases are important and why they need to pay more attention to this group of diseases. The template letter is also available in Spanish, French and Portuguese.

Please write us to access the Word document and to receive more tips on how to address your letter:

Template letter for Government and Media in English to Advocate for CDG and Rare Diseases

Carta Modelo em Português dirigida ao governo para a inclusão dos Defeitos Congénitos da Glicosilação (CDG) e doenças relacionadas na agenda dos temas de saúde

Carta modelo en Español dirigida al gobierno para la inclusión de los Defectos Congénitos de Glicosilación (CDG) y enfermedades relacionadas en la agenda de temas dedicados a la salud

Modèle de lettre en Français pour écrire au gouvernement et défendre l'inclusion des Anomalies Congénitales de la Glycosylation (CDG) et ses maladies associées dans les sujets de santé du gouvernement

Advocating for CDG to the news media:

Use our Press Material: In an effort to share your story and make it as easy as possible for producers and journalists, we will soon have press material with issues that concern the  CDG community to help you along the way. Tips on how to spread the word within the media will be given.
Please write us for access to the Word documents of our Press Material available below and to receive more tips on how to address your letter to the media:


Page modified at Thursday, April 30, 2020 - 20:00