Strengthening our Community:
The Inaugural Patient Community Advisory Council
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Dear Community Members,
I am thrilled to announce the establishment of the inaugural Patient Community Advisory Council (PCAC) for the Lymphangiomatosis & Gorham's Disease Alliance (LGDA), the Lymphatic Malformation Institute (LMI), and LGDA Europe. As the Chair of the PCAC, I am grateful to lead this council and work alongside our community to enhance support, education, advocacy, and research. The PCAC members include Jen Boyce, Tony Aguillon, Amber McCall, and Leeya Alperin.
Our community has always been a source of strength, with individuals supporting each other through platforms like Facebook support groups and sharing experiences through podcasts and websites. The PCAC is our next step in taking that support to new heights. Our mission is to identify and address needs within our community, serving as a liaison between the community and our organizations.
One of our primary goals is outreach and education. We will review existing programs, educational materials, and outreach activities conducted by LGDA, LMI, and LGDA Europe. We are eager to involve community members as champions of these programs, ensuring they are tailored to meet our unique needs.
Research advisement is another aspect of the PCAC's work. We understand the importance of keeping the patient voice central to research pursuits. Collaboration with the Medical and Scientific Advisory Council (MSAC) and organizational leadership will be key to ensuring our voices are heard.
I invite each of you to join us in celebrating the formation of the PCAC and to support our endeavors. Together, we can create a stronger sense of belonging, improve patient outcomes, and advocate for the resources and care we deserve. We are a family, a community, all working towards better lives for our warriors. We are hope in action.
Warm regards,
Diane Bomberg Chair, Patient Community Advisory Council
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We're happy to host a mental health webinar series featuring two rare disease advocates.
Meet our speaker - Kathleen Bogart, PhD
Kathleen is an associate professor of psychology and the Director of the Disability and Social Interaction Lab at Oregon State University. She is a social/health psychologist specializing in disability, ableism, and rare disorders such as facial paralysis.
Kathleen, both a rare disease patient and a dedicated researcher, will share her experience working with rare disease adult patients and their common concerns. Her comprehensive engagement with adult patients has bestowed her with invaluable insights, enabling her to extend vital assistance to individuals navigating similar challenges.
Meet our speaker - Al Freedman, PhD
Al is the practice founder of Freedman Counseling Associates. He is a licensed psychologist and devoted father who has been immersed in the world of rare diseases for more than twenty years. Throughout his journey, Al has closely engaged with individuals and families impacted by rare conditions.
His son, Jack, bravely confronted Spinal Muscular Atrophy for 26 years. Jack's journey, along with the unwavering support from those around them, has been an invaluable source of knowledge and insights that Al shares with the rare disease families.
The series is made possible by a grant from Global Genes.
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Taking the Mystery
Out of Scientific Research
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LGDA is growing our list of plain language summaries from our library of scientific presentations.
Our next summary features Dr. Yoav Dori, MD, PhD from the University of Pennsylvania from his 2022 presentation on diagnostic tools and treatments for central lymphatic flow issues.
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LMI/LGDA International Scientific Conference on Complex Lymphatic Anomalies |
- Patient Voice Sessions
- Genetic Causes of CLAs
- Patient Centered Research and Registries
- Preclinical Models of CLAs
- Clinical Advances
- New Technologies for CLA Research
- Advances in Imaging of CLAs
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Community Story - The Boyce Family |
Meet Will who has General Lymphatic Anomaly (GLA). His family is sharing their journey with the CLA community starting with Will's birth, through his diagnosis, and treatment plan.
They hope their story will connect with doctors and clinicians so they gain a better understanding of the challenges faced by families with a rare disease.
To the Boyce family - Thank you for sharing your story with the CLA community.
To other CLA families, you are not alone. Sharing your story brings us together as a community.
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Every donation brings us a step closer to a building a long-term
mental health program for those with CLAs.
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Have you joined the LGDA International Patient Registry for Complex Lymphatic anomalies?
We encourage those newly diagnosed with a CLA to join the patient registry (parents can join for their children). Each registry profile adds to our body of knowledge. We learn where patients are located, what symptoms they are experiences, how they are being treated by their doctor, and what challenges they face in getting care.
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International LGDA Patient Registry
Act Now!
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Each registry profile adds to our body of knowledge. We learn where patients are located, what symptoms they are experiences, how they are being treated by their doctor, and what challenges they face in getting care.
This registry has no borders and is not bound to a medical institution or a specific type of research. If you have a CLA, wherever you are in the world, you can join.
Already part of the registry? Don't forget to come back and retake the survey to update your information.
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Raise Awareness about CLAs |
Our Patient and Family Guidebook is available in 9 languages - English, Chinese, Spanish (Europe), Spanish (Latin America), French, Italian, German, Portuguese (Europe), and Portuguese (Brazil).
Together, we can support those affected by these rare diseases and promote hope for a brighter future.
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WE Did It!
The Orphan Disease Center released its 2023 grant opportunity from funds raised during this year's Million Dollar Bike Ride. A total of $60,679 is available for CLA research thanks to matching funds from the University of Pennsylvania and donors from around the world. Thank you!
Since 2014, the CLA community in partnership with the Orphan Disease Center at the University of Pennsylvania have raised more than $970,000 for life changing CLA research.
Letters of Interest (LOI) are due Friday, September 15 @ 8:00 pm ET
Help us spread this opportunity to the CLA research community!
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Our next newsletter will be sent in November.
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