Beckwith Wiedemann Syndrome Awareness

Beckith-Wiedemann syndrome (BWS) is a rare genetic condition that affects growth and development. Each individual with BWS has a unique experience, and families often navigate different challenges and milestones along their journey.

At Sweet Charli’s, raising awareness for BWS is deeply meaningful to us. We believe that awareness helps build understanding, compassion, and support for families touched by rare conditions.

Awareness plays an important role in helping communities learn, connect, and support one another. By sharing information and resources, we hope to help spread understanding and encourage kindness, inclusion, and empathy. Every story is different, and every journey deserves to be seen, respected, and supported.

For accurate and up-to-date information about Beckwith-Wiedemann syndrome, we encourage visiting the following trusted organizations:

• Beckwith-Wiedemann Children’s Foundation International – A family-run nonprofit providing education and support for families diagnosed with BWS

          https://www.beckwithwiedemann.org 

• CHOP (Children’s Hospital of Philadelphia) – Medical overview and resources from a specialized clinic.
  https://www.chop.edu/conditions-diseases/beckwith-wiedemann-syndrome

• GARD – Genetic and Rare Diseases Information Center – NIH-hosted page with reliable summary information on BWS.
  https://rarediseases.info.nih.gov/diseases/3343/beckwith-wiedemann-syndrome

• NORD (National Organization for Rare Disorders) – Advocacy and education for rare diseases including BWS (listed in CHOP resources). 

         https://rarediseases.org/rare-diseases/beckwith-wiedemann-syndrome
 

These organizations provide educational resources, research updates, and family support.

Sweet Charli’s was created with heart, purpose, and positivity. Through awareness, storytelling, and community, we hope to help shine a light on BWS and support the families and individuals connected to it.

Thank you for being part of this journey and helping us spread awareness with compassion and care.

The information on this page is for general awareness purposes only and is not intended to provide medical advice, diagnosis, or treatment. Please consult qualified healthcare professionals for medical guidance.