K-T Support Group

Improve the quality of life for people with combined capillary lymphatic venous malformations through education, research, empowerment, and connections.

Expand our biennial meeting schedule to cover more regions and members

Work with physicians and scientists to advocate for the FDA, NIH, and other agencies to help fast-track any potential pharmaceutical trials.

Expand communications by engaging others as community leaders; collaborating with other advocacies.

Focus on fundraising to support objectives.

Develop a network of physicians for adult patients for the transition from pediatric care. None currently exists.

Work to include patient voices early in the scientific process: promote researcher understanding of the patient experience with K-T; capture patient perspectives and preferences on benefit-risk;
Incorporate patient input in clinical trial development and continuous improvement.

- K-T Support Group has a network of pediatric clinicians and researchers who currently treat patients or actively research potential treatments. Our teamwork with those individuals and organizations will assist us in accomplishing our advocacy goals.

- Relationships with vascular anomaly clinics across the globe will be useful in finding hosts for regional meetings.

- Recent works with awareness have opened doors for improved fundraising opportunities.

- Work with our network of physicians is ongoing with promotion of the Vascular Anomalies Primer. The development of targeted therapeutics is assisting our recruitment efforts for adult physicians.

- As a founding member of the first vascular anomalies research consortium, our goal is to promote the inclusion of patient voices early and often in clinical trials.

Our network of physicians and researchers is expanding. Global projects are underway, including additional international conferences.

Membership has increased by more than 30% in the last year because of outreach efforts.

We have increased our fundraising each year for the past six years through social media and patient-led fundraisers.

We collaborated with a group of special interest clinicians to create a tutorial to present to physicians in order to encourage more doctors into vascular anomalies as a specialty. Our tutorial was presented to a group of adult medicine physicians; this tutorial gave awareness to pediatric hematology/oncology groups across the USA.

A committee of patients has been assembled to form a strategy for transitioning to adult care for parents, leading to more independant adult patients. Clinicians will join as the transition plan progresses.

Many in our consortium have always been open to patient voices. A group of our researchers have volunteered to work our member committee to establish a playbook for both patient and researcher side.