Get Involved
Only together – with the strength of those affected by Weaver syndrome, their families, dedicated doctors, therapists, and generous donors – can we move mountains and change lives.
Your commitment brings hope, creates connection, and helps our little and big heroes grow beyond themselves.
Research
Because the condition is so rare, there is little research, no targeted treatment, and no reliable prognosis, as each variant presents differently. This is why we would like to put together information of weaver individuals to get a better and greater understanding.
We cordially invite you to complete our Weaver Syndrome Questionnaire and the Overgrowth Syndromes Alliance (OSA) Patient Priority Survey, to share relevant new research, or to express your interest – as a medical professional or organization – in engaging with individuals and families affected by Weaver syndrome.
Your engagement
Any Kind of involvement is highly appreciated to raise more awareness and medical support. Some ideas on what kind of involvement helps are listed below.
Ideas:
- Non-profit foundation to simplify donation process
- Fundraising campaigns
- Newsletter
- Translation of information
- Story Sharing
- Let us know your idea!