RESOURCES
ReMARKable You! is proud to partner with the following organizations and programs. As an individual born with the Rare Condition of Klippel-Trenaunay Syndrome (KTS) and a Port Wine Stain Vascular Birthmark (PWS), it is Maille’s passion to provide education and advocacy about these conditions, as well as raise funds to help support research and treatment options.
VASCULAR BIRTHMARKS FOUNDATION (VBF)
The Vascular Birthmarks Foundation (VBF) is an international charitable organization that networks those affected by a vascular birthmark, anomaly, tumor, or syndrome to the appropriate medical professionals for evaluation and treatment. VBF also educates physicians and affected families regarding treatment options, supports relevant research, mobilizes medical missions, and empowers those living with vascular birthmarks.
For more information on the VBF or to join the VBF Global Ambassadors or VBF Global Ambassadors Teen Committee, check out their website at www.birthmark.org.
NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)
The National Organization for Rare Disorders (NORD) is a national nonprofit organization dedicated to individuals with rare diseases and the organizations that serve them. NORD represents all individuals and families affected by rare disease by working at the intersection of care, research, policy, and community for all rare diseases. NORD is also the host and founder of International Rare Disease Day.
For more information about NORD or Rare Disease Day, please visit them at www.rarediseases.org.
PURPLE POLKA DOT RACE
The Purple Polka Dot Race is a 5K and Family Fun Run Fundraiser for the Vascular Birthmarks Foundation. Since 2016, The Purple Polka Dot Race has been hosted annually by race founder, Jody Lee, in honor of her daughter, Meghana, who was born with a port wine stain birthmark on her face.
In November 2023, Maille joined with three vascular birthmark friends and fellow VBF Global Ambassadors to host the first annual Pennsylvania Purple Polka Dot Race (PAPPDR). A satellite race of the main race in Michigan, the PAPPDR brings the mission of the Purple Polka Dot Race to the East Coast and allows for more families to participate in this inspirational 5K and 1mile Fun Run event!
For more information about the Purple Polka Dot Race, please visit their website at www.purplepolkadotrace.com.
VASCULAR ANOMALIES ALLIANCE
The Vascular Anomalies Alliance (VAA) is a dedicated organization focused on supporting individuals and families affected by vascular anomalies, which are a diverse group of blood vessel disorders, including malformations and tumors. VAA works to raise awareness, provide education, and advocate for improved healthcare and research for these often misunderstood and complex conditions. Through community outreach, the alliance fosters connections among patients, caregivers, and medical professionals, offering resources and support systems to improve the quality of life for those impacted. By championing advancements in treatment and promoting collaboration, VAA plays a vital role in empowering the vascular anomalies community worldwide.
K-T SUPPORT GROUP
The K-T Support Group is an organization created to support, connect, educate, and empower families and adults affected by Klippel-Trenaunay Syndrome and other combined vascular malformations.
To learn more about the K-T Support Group, please visit them at www.k-t.org.
CHILDREN’S HOSPITAL OF PHILADELPHIA (CHOP)
The Comprehensive Vascular Anomalies Program (CVAP) at The Children’s Hospital of Philadelphia (CHOP) is an innovative program for individuals with vascular anomalies and vascular malformations.
For more information about the CVAP, please check out their website at https://www.chop.edu/centers-programs/vascular-anomalies-program.
MORE THAN A BIRTHMARK
More than a birthmark is an interview series created by Maille in March 2021 to celebrate the lives of individuals born with birthmarks, vascular birthmarks, and other associated conditions.
To watch More Than A Birthmark, please visit the More than a Birthmark YouTube Channel at http://www.youtube.com/@morethanabirthmark4832. If you would like to be a guest on More Than A Birthmark, please click the button below to complete our form.
I AM REMARKABLE
I am ReMARKable is Maille’s educational presentation about ReMARKable You!
To book Maille to present I am ReMARKable at your school, church, club, or community youth group, please reach out by completing our contact form.
