Mental Health Series

Register Now! 

Join our insightful webinar series focused on empowering patients and their families with valuable knowledge and self-help techniques to address mental health issues and concerns.

Rare Disease Mental Health - Complex Lymphatic Anomalies

Participants will gain a deeper understanding of the diverse nature of mental health concerns, realizing that families, patients, and caregivers have unique experiences. By recognizing these differences, attendees will be better equipped to navigate the challenges and complexities of mental health.

Together, we can create a supportive and understanding community that fosters growth and healing. Register now to secure your spot!

The webinar series is made possible through a grant from Global Genes.

Understanding the Distinctive Challenges Faced by Rare Disease Adult Patients

Thursday, September 21 at 19:00 – 20:00 pm CET
Speaker: Dr. Kathleen Bogart

Join us for an enlightening and empowering webinar that delves into the distinctive challenges faced by rare disease adult patients. We understand that the journey can be tough, but you are not alone.

Living with a rare disease as an adult comes with a set of hurdles that can feel overwhelming at times. In this webinar, we will explore the unique challenges faced by adult patients and equip you with valuable techniques for self-care and empowerment.

Who should attend:

  • Adult patients
  • Caregivers and loved ones of adult patients
  • Healthcare professionals seeking insights into the unique challenges faced by adult patients

Strengthening Relationships and Empowering Children: Navigating the Unique Challenges Faced by Rare Disease Families

Thursday, October 5 at 19:00 – 20:00 pm CET
Speaker: Dr. Albert Freedman

Living with a rare disease can be an arduous journey, not only for the affected individuals but also for their families. There is an immense emotional toll that rare diseases can have on families. It starts on finding and receiving a rare disease diagnosis which can be overwhelming. However, the journey doesn’t end with a diagnosis; it continues with treatment, each step posing new challenges for families.

In this webinar, we will explore the unique mental health needs of families, and how to foster a compassionate and understanding family environment to find strength, hope, and resilience.

Who should attend:

  • Patients
  • Family members of a rare disease patient
  • Healthcare professionals seeking insights into the unique challenges faced by adult patients

Click on the link to register!

Meet the Speakers

Dr. Albert Freedman
Dr. Albert Freedman, a licensed psychologist, has provided child, adolescent, adult and family psychotherapy, as well as consultation to schools, health care organizations, rare disease advocacy organizations, and biopharmaceutical companies for over 20 years. He specializes in working with children, adolescents, and families, and has a special interest in families affected by disability and complex medical conditions.
Dr. Kathleen Bogart
Dr. Kathleen Bogart, is an Associate Professor of Psychology at Oregon State University. As a person with a disability, she is passionate about researching, educating, and writing about ableism, or disability prejudice. Her research focuses on the psychosocial implications of living with disability, rare disorders, or facial differences such as Moebius syndrome. An advocate for people with disabilities, she has served on the American Psychological Association Committee on Disability Issues in Psychology, the Rehabilitation Psychology editorial board, and the Moebius Syndrome Foundation Scientific Advisory Board.