EPODIN Announces DIN Day to raise awareness on rare neurological diseases

EPODIN Announces DIN Day to raise awareness on rare neurological diseases

These conditions affect around 1.3 million people worldwide

June 2024 – The European Patient Organisation for Dysimmune and Inflammatory Neuropathies (EPODIN) is excited to announce the third annual DIN Day, an international awareness day dedicated to rare neurological diseases known as dysimmune inflammatory neuropathies (DIN). 
 DIN Day celebrates every year on June the 11th because this is the date of Alexander the Great’s death. According to recent studies, the Macedonian king would have died from the consequences of a DIN, the Guillain-Barrè Syndrome.

Understanding Dysimmune Inflammatory Neuropathies
DIN are rare diseases where the body’s immune system attacks its own nerves. This can cause serious problems like muscle weakness, numbness, balance issues, severe fatigue, and pain. In some cases, such as Guillain-Barré syndrome, it can even be life-threatening. These conditions are often diffcult to diagnose, leaving many patients without the right treatment for years.

The goal of DIN Day
DIN Day aims to bring attention to the struggles of those living with these conditions. Many patients face long delays before getting a correct diagnosis and finding effective treatment.
Jean-Philippe Plançon, President of EPODIN, explains:

“Imagine slowly losing the ability to use your arms and legs, making everyday tasks almost impossible. This is the reality for millions of people. DIN Day is crucial for improving diagnosis, treatment, and overall support for these patients.”

Improving diagnosis and treatment
One of the biggest challenges for DIN patients is the long wait for a correct diagnosis, which can take up to 16 years. EPODIN is calling for better training for doctors to recognise these rare diseases sooner.

The need for better treatments
Current treatments rely mostly on medicines derived from plasma, which can be subjected to severe shortages as experienced with the Covid-19 pandemic. Moreover the availability of plasma derived medicinal products is hugely affected also by national healthcare systems effciency and organisation. Therefore EPODIN is advocating for more plasma donations and the development of new treatments to ensure that every patient gets the care they need.

Join Us in Making a Difference
DIN Day is a call to action for everyone – researchers, healthcare professionals, policymakers, and the public. Together, we can improve the lives of those living with DIN. We invite everyone to get involved by learning more about these conditions, supporting research, and advocating for better healthcare policies.

DIN Day official website – dinday.org
Download social media kits printable materials in English, French, Italian, Romanian, Spanish, German, Swedish.
Join the DIN Community and make your wish for the day.
Follow the webinars on DIN Day and get more information about DIN people and DIN care.

EPODIN supports patients with dysimmune inflammatory neuropathies by advocating for better healthcare, supporting research, and raising awareness.
For more information about our national members organisation, our work and how to get involved, visit www.epodin.org

Media Contact
Patrizia Garzena – Communication officer , email: communication@epodin.org
Jean-Philippe Plançon – President of EPODIN, email: jean-philippe.plancon@epodin.org