The Diagnostic Odyssey for Individuals With Rare Diseases: Kaposiform Lymphangiomatosis and Other Lymphatic Conditions
A disease is considered “rare” if it affects fewer than 200,000 individuals in the US. Uncovering the genetic roots of rare diseases and using those insights to develop new treatments is an ongoing process. Kaposiform lymphangiomatosis (KLA) is a rare, life-threatening congenital lymphatic malformation. Diagnosis is often delayed due to complex indistinct symptoms, but recently emerging diagnostic tools and therapies are on the horizon. Living with a rare disease impacts both the individual and their family/caregivers both physically as well as mentally. This activity will explore recent advances in the diagnosis and treatment of KLA and other lymphatic conditions, including current clinical trials. It will also share insights and perspectives from and provide strategies to support the well-being of both the individual and their family/caregiver(s).
This activity is provided by Optum Health Education and UnitedHealthcare.
No commercial support was received for this activity.
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This activity is designed to meet the educational needs of case managers, counselors, nurses, nurse practitioners, pharmacists, pharmacy technicians, physicians, PAs, psychologists, social workers, therapists and other health care professionals (HCPs) who care for individuals with KLA.
At the end of this educational activity, participants should be able to:
- Describe the diagnostic journey for individuals with KLA and other lymphatic conditions.
- Explain emerging diagnostic tools and therapies, including clinical trials for KLA and other lymphatic conditions.
- Discuss challenges and barriers in the diagnosis and treatment of KLA as well as the associated physical and mental health issues.
- Incorporate individual and caregiver engagement in shared decision-making.
- Summarize interprofessional team strategies for improving coordination and communication to support the well-being of both the individual and their family/caregiver(s).
Following each webcast in our The Diagnostic Odyssey for Individuals With Rare Diseases Webcast series, we will be releasing an accompanying podcast sharing the personal experience from the patient, family or caregiver perspective. These podcasts will provide a more in-depth understanding of the challenges and barriers that patients and their caregivers face as they navigate the complexities of the health care system.
Click here to access the podcast, The Diagnostic Odyssey for Individuals With Rare Diseases: Spotlight on the Caregiver, Lymphangiomatosis (Podcast).
Denise Adams, MD
Director of the Complex Vascular Anomalies Program (CVAP)
Alan R. Cohen Endowed Chair in Pediatrics
Professor of Pediatrics at the University of Pennsylvania Perelman School of Medicine
Children's Hospital of Philadelphia
About the presenter
Dr. Adams is a prominent pediatric hematologist-oncologist. She is the Director of the Comprehensive Vascular Anomalies Program (CVAP), a cutting-edge, multidisciplinary program that seeks breakthrough treatments and cures for children, adolescents and young adults with rare, life-threatening tumors and malformations of the vasculature, which includes the arteries, veins, capillaries, lymphatics and combined lesions.
As a leading expert in the field, Dr. Adams is actively engaged in clinical and translational research on complex vascular anomalies and regularly publishes studies in leading journals on the topic. She has received numerous awards for her teaching and mentorship and for her research and clinical accomplishments. Hospitals, universities and conferences around the world have invited her to speak on the topic of vascular anomalies, recognizing her expertise in this area.
Robin K. Blitz, MD
Family Engagement Center / Special Needs Initiative / Complex Health Solutions
Sarah Chart, RN
Optum Health Education
Rebecca Gleason, RN, CCM
Optum Health Education
Disclosures of relevant financial relationships
In accordance with the Accreditation Council for Continuing Medical Education's (ACCME) Standards for Integrity and Independence in Accredited Continuing Education, Optum Health Education (OHE) requires all those in control of educational content to disclose their financial relationships with ineligible companies within the prior 24 months. Ineligible companies are defined by the ACCME as companies whose primary business is producing, marketing, selling, re-selling, or distributing health care products used by or on patients. Individuals must disclose all financial relationships, regardless of the amount, with ineligible companies and regardless of their view of the relevance of the relationship to the education. OHE ensures that the content is independent of commercial bias.
The planners have no financial relationships to disclose.
Dr. Adams has disclosed that she is a consultant for Novartis and Venthera.
Method for calculating CE credit
CE credit was calculated by the complexity of content.
In support of improving patient care, this activity has been planned and implemented by Optum Health Education and UnitedHealthcare. Optum Health Education is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE) and the American Nurses Credentialing Center (ANCC), to provide continuing education for the health care team.
Credit designation statements
This activity was planned by and for the health care team, and learners will receive 1.00 Interprofessional Continuing Education (IPCE) credits for learning and change.
The participant will be awarded up to 1.00 contact hour(s) of credit for attendance and completion of supplemental materials.
The American Academy of Nurse Practitioners Certification Program (AANPCP) accepts credit from organizations accredited by the ACCME and ANCC.
This activity is approved for 1.00 contact hour ([0.10] CEU) in states that recognize ACPE.
Attending the full program will earn 1.00 contact hour.
Unique Activity Number(s): JA0007123-9999-22-173-H01-P/T
Optum Health Education designates this enduring activity for a maximum of 1.00 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
The American Academy of Physician Assistants (AAPA) accepts credit from organizations accredited by the ACCME.
The Commission for Case Manager Certification has approved this program for a maximum of 1.00 clock hours for Certified Case Managers (CCM).
Optum Health Education is approved by the American Psychological Association (APA) to offer continuing education for psychologists. Optum Health Education maintains responsibility for this program. 1.00 CE hour.
As a Jointly Accredited Organization, Optum Health Education is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved under this program. State and provincial regulatory boards have the final authority to determine whether an individual course may be accepted for continuing education credit. Optum Health Education maintains responsibility for this course. Social workers completing this course receive 1.00 enduring continuing education credits.
Counselors and/or marriage and family therapists
CA: The Board of Behavioral Sciences has deferred CE course approvals to APA and ASWB for its licensees. See those approvals under Psychologists and Social Workers.
Other States: If your state is not specifically listed, nearly all state Counselor and MFT boards accept either APA or ASWB approval, or are reciprocal with other state licensing board approvals, such as those listed below. Check with your board to be sure.
A certificate of attendance will be provided to learners upon completion of activity requirements, enabling participants to register with licensing boards or associations that have not been preapproved for credits. To apply for credit types not listed above, participants should use the procedure established by the specific organization from which they wish to obtain credit.
- 1.00 ACPE - Pharmacists
- 1.00 ACPE - Pharmacy Technicians
- 1.00 AMA - Physicians
- 1.00 ANCC - Nurses
- 1.00 APA - Psychologists
- 1.00 Attendance - General Attendance
- 1.00 CCMC - General - Case Managers
You must be logged into your account to participate in this activity. Get started by clicking the down arrow under “Kaposiform Lymphangiomatosis and Other Lymphatic Conditions” and viewing the content; then follow the prompts at the bottom of the screen. At the end of the activity, you will be able to view, save or print your certificate of participation. A complete listing of all of your activities can be found under “My Account,” “My Activities.”