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Diversity Statement

Sturge-Weber Foundation Diversity and Inclusion Statement: 

At the Sturge-Weber Foundation (SWF) we have a diverse patient and family group as our disease state is rare and affects 1 in 50,000 people without preference to age, income, sex, race, or national origin. As such, we strive to make sure that our Foundation’s families, Clinical Care Networks (CCN) and their clinicians, and International Research Network (SWFIRN) and their researchers, scientists, and volunteers represent a diverse cross-section of racial and socio-economic backgrounds.

The Foundation takes steps to ensure diversity in our outreach and research in these areas:

  • Identify regions of the country that are underrepresented where The SWF will need to further engage where there is not a Clinical Care Network or Research Lab today.: i.e. recruiting Clinical Care Networks, and Hospital systems in cities like Philadelphia, Miami, Los Angeles, Memphis, and St Louis. 
  • Identify universities and colleges that serve historically underrepresented populations. The SWF together with our clinicians and scientists will send out the call for abstracts and promote and advertise our conference in those areas.
  • Announce our professional groups and advertise and promote our meeting and a call for abstracts.
  • The key subject matter experts of Sturge-Weber Syndrome will recognize and are encouraged to nominate junior associates or under-represented minorities to be a participant at our meeting.   
  • The SWF will provide accommodations as needed i.e. dietary, lactating rooms, childcare, etc.  

In the future year, the Foundation will be launching The SWF Warrior University where we will also recruit, and educate professionals in Sturge-Weber Syndrome. This will have the ability to earn credits and further education for anyone. This will also further the ability to encourage those in underrepresented areas to learn more about Sturge-Weber Syndrome and encourage involvement in our syndrome. The opportunity will be advertised and promoted as stated above to get involved in creating the material for the University.

The Sturge-Weber Foundation prides itself to include everyone in learning all we can about Sturge-Weber Syndrome and furthering the science around Sturge-Weber Syndrome. Diversity is critical and a priority for the foundation governed by our team. 

Help us by taking our diversity and inclusion survey today.

Although we are already a very diverse group coming from all walks of life and coming together with the commonality of Sturge-Weber Syndrome, yet, when we meet we find that we have many things in common!   


Federal and State requirements now need us to define the diversity of those we serve. This is imperative when applying for research or educational grants that will further our mission.

We are asking you to fill out our survey from the patient's perspective only.

Please help us by updating and inputting the patient’s information so we can meet government requirements. And in return, help our community more.

BIRTHDAY CLUB: While you are filling out the survey, opt into the "Birthday Club." Theresa Lamb, The SWF Birthday Club Ambassador, will send patients a birthday card in the mail. It's just a little way for us to celebrate YOU!

Note: We do not use this information for financial gain (i.e. selling your information) and will not share your personal information outside grant applications or to support The Foundation initiatives.