PANS/PANDAS Nederland Patiëntenvereniging

20/10/2024

European advocates created EXPAND, The European Immuno-neuropsychiatric Association out of their unique recognition of the need to create an international standard of care in the diagnosis and treatment of PANS and PANDAS. With this in mind, as in 2022, members of the EXPAND Scientific and Medical Advisory Board and invited guests will attend and participate as speakers in The Alex Manfull Fund 2024 Symposium for the purpose of advancing the understanding and treatment of neuroimmune psychiatric disorders such as PANS and PANDAS globally. In addition, EXPAND's board members and guests are dedicating days prior to the symposium to discuss issues particular to Europe, and then join The Alex Manfull Fund Scientific and Medical Advisory Board for a working breakfast the day after the symposium to further collaboration across the Atlantic, with additional opportunities for networking and collaboration to follow. The members of the EXPAND Scientific and Medical Advisory Board and their invited guests give their time generously as volunteers in addition to all other work responsibilities. Our patient community is fortunate to have their dedication and commitment.

The theme of The Alex Manfull Fund PANDAS/PANS Symposium (November 2 in Portsmouth, NH) is “Dialogue Saves Lives.”

In addition to traditional presentations, we will have panel discussions and “Lightning Round” talks. One of our panels is featured here — audience members will be able to ask this clinical panel questions about PANDAS/PANS.

To see all the speakers and the full program please visit: https://thealexmanfullfund.org/tamf-2024-symposium-schedule/ . (Note: We are very sorry to report that, due to unforeseen circumstances, Dr Kiki Chang regrets he will not be able to attend .)

05/06/2024

"RARELY helped well: The need for a national strategy and a European action plan for rare diseases."

A link to the Dutch manifest can be found in this article. The English translation is in the comments.

Manifest

03/12/2023

Scanning the QR code takes you directly to the donation page or use this linK: https://app.ribbon.giving/links/3NKOD3

Every euro/dollar brings us closer to our goal and new discoveries.

If you would like to give a donation in memorium or in honor of someone, that is possible through this fundraising platform. Perhaps you would like to acknowledge a researcher, medical/mental health provider, educator, or other professional who made difference? A friend/family member who has been there for you? Your fellow parents in the trenches with you? Or to honor your child? Supporting this campaign is an opportunity to contribute directly to this exciting, ground-breaking work. It would be our privilege to have you choose EXPAND for your year-end giving.

For those in the U.S., EXPAND is using a U.S. fiscal sponsor with a 501 C3 status, which allows you to take advantage of the tax write-off. You will receive a receipt.

Please consider sharing this campaign in your newsfeed.

28/11/2023

In the Netherlands 🇪🇬 (13-19 November)

"The number of children with pneumonia continues to rise. In week 46 (13-19 November) there were 103 per 100,000 children aged 5-14 years with pneumonia, compared to 83 per 100,000 children the week before. And the increase also continues unabated among 0 to 4-year-olds, from 124 (6-12 Nov) to 143 (13-19 Nov) per 100,000."

Link in the comments.

21/11/2023

*Research Supporting the Use of IVIG Accumulates*

Proof of the efficacy of treatment is important in many countries where families struggle to have the cost of IVIG covered by insurance. The Netherlands is unique in that PANS and PANDAS are already accepted indications for IVIG as an add-on. The challenge in the Netherlands is finding specialists willing to take on suspected or diagnosed PANS/PANDAS patients. Even when you find a willing clinician, providers face institutional challenges to be allowed to take on complex patients. PANS/PANDAS Nederland is working methodically to find good solutions. Research regarding the efficacy of treatment of these conditions, and research that illucidates the mechanisms that leave patients vulnerable to develop PANS/PANDAS, are important in the Netherlands for that purpose. -- To overcome the long-standing idea that these are controversial conditions. Uncertainty has prevented clinicians from being more proactive helping our patient community. Even after research is published, it can take time for clinicians to move beyond outdated impression. That is why . We are making progress and feel hopeful. 🤞

Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) is defined by acute onset of diverse neuropsychiatric manifestations, presumably in the setting of underlying immune dysfunction. We used standardized neuropsychological testing to assess how intravenous immunoglobulins (IVIG) impact neurologica...

21/11/2023

Two years ago Fleur Senior, then 14, was considered by her teachers to be on course to read maths at Oxford University.

01/11/2023

Interview with Parisa Hajjari Zhao, a doctoral student at GNC specialising in treatment and diagnostics in PANS/PANDAS

07/10/2023

LINK to research: https://karger.com/dne/article-pdf/doi/10.1159/000534061/3999084/000534061.pdf

06/10/2023

Common childhood infections can sometimes cause psychiatric conditions

20/09/2023

And why many doctors do not realise it