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Petitioning CDG community and 20 others

May 16th, World Congenital Disorders of Glycosylation (CDG) Awareness Day

Target to: World Health Organisation (WHO)

Society needs to know that Congenital Disorders of Glycosylation (CDG) is a serious cause of death and disability. Patients and family members, suffer directly the consequences of living with a disease, for which the most forms do not have a cure.

While public awareness and understanding of rare disease challenges has increased in recent years, much remains to be done. Limited awareness and visibility of CDG contributes to underdiagnosis of these disorders, as well as difficulties in accessing specialised services and proper rehabilitation support. Early diagnosis of CDG is important for several reasons such as the timely management of clinical problems, genetic counseling, and when available, treatment. Thus, CDG is the prototype of condition that cries out for visibility and awareness-raising actions targeted for families, professionals and general public. Consequently, research on CDG to pave the way for therapeutic approaches and development will be boosted.
In the light to the need of awareness and visibility, CDG community takes the step to formally request from the World Health Organization (WHO) the declaration of an annual World Congenital Disorders of Glycosylation (CDG) Awareness Day on May 16th.

Why a World Congenital Disorders of Glycosylation (CDG) Awareness Day?

AWARENESS for CDG is key! Please join us, Help us raise Congenital Disorders of Glycosylation (CDG) awareness globally, in all countries of the world, add your name to our petition to make

May 16th World Congenital Disorders of Glycosylation (CDG) Awareness Day!

WE CAN MAKE A DIFFERENCE! YOU CAN MAKE A DIFFERENCE!

We are  asking for your support  to increase awareness and visibility of CDG disease.

JOIN THE FIGHT
Sign our online petition and help us make May 16th the official World Congenital Disorders of Glycosylation (CDG) Awareness Day —a day that can help save lives.

World Congenital Disorders of Glycosylation (CDG) Awareness Day is an initiative of the world CDG patient groups and their professionals.

Please contact us for more information: sindromecdg@gmail.com

This petition was delivered to:
  • CDG community
  • Congenital Disorders of Glycosylation
  • Rare Diseases
  • Orphan diseases
  • Health Care Professionals
  • Genetic diseases
  • Metabolic diseases
  • Health
  • Researcher
  • Science
  • Neglected Diseases
  • Advocacy
  • Patient groups
  • Patient advocacy groups
  • Medicine
  • biology
  • Nurse
  • Awareness
  • fundraising
  • World Day
  • World disease


World CDG patient advocacy groups started this petition with a single signature, and now has 6,670 supporters. Start a petition today to change something you care about.




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