Throughout the last month or so, Chelsea’s Hope and Lafora disease have been in the news quite a few times. Keep reading to learn about and find links to each one!

Articles

Rare Classroom: Lafora Disease

Patient Worthy
James Moore
July 28, 2023

In Patient Worthy’s new series about rare disease education, James Moore details Lafora disease in easy-to-understand bullet points. Without a doubt, it is a wonderful resource for learning the basic information and impact of Lafora.

Childhood Dementia: Fighting The Rare Documentary – Lafora Disease

Dementia Alliance International
Niki Markou
July 20, 2023

Dementia Alliance International helps to spread the word of Fighting The Rare, including a brief summary of Niki Markou (A.K.A. our Director of Family Support) and Angelina’s experiences with Lafora.

Lafora Disease: The Stories of Robin and Angelina

Eurordis
July 2023

Featured in this article are two Lafora disease patients: Angelina and Robin. In essence, their mothers, Niki Markou and Veronique Gadomski (from France Lafora), tell their stories. While there are similarities between their experiences, it is evident that each Lafora patient and their family has their own unique stories – each and everyone worth learning about!

Fighting The Rare: Documentary Spotlights Lafora Disease Research

Patient Worthy
James Moore
August 4, 2023

Our partner, Patient Worthy, gives readers a list of the international scientists that took part in Fighting The Rare, accompanied by a brief explanation of Lafora Disease.

Videos

Fighting The Rare: Lafora Disease Documentary

CheckRare
June 22, 2023

With their spotlight on Fighting The Rare, CheckRare (a rare disease organization) gives an explanation in scientific terms of what causes Lafora disease. Additionally, this article includes a video of Niki Markou and Jordi Duran (Ph.D., Associate Professor at Institut Químic de Sarrià in Barcelona) talking through their roles and aspirations during the creation of Fighting The Rare.

Lafora Disease Explained

CheckRare
June 23, 2023

In CheckRare’s second Lafora disease-focused article in June, they delve into the common symptoms of Lafora, and hypothesize about a possible treatment. Also highlighted in this article is a Youtube video of Niki Markou and Jordi Duran discussing Lafora disease symptoms and pathophysiology.

Podcast

Lafora Disease Experts on Clinical Trials, Challenges Funding Rare Disease Research | VibeCast Ep 19

Vibe Bio
Hosted by Ray Dogum with guest Niki Markou
July 13, 2023

If you’re looking for something to listen to regarding news on Lafora disease, you can check out the latest VibeCast featuring Niki and Dr. Duran! Host Ray Dogum from Vibe Bio asks about Lafora disease, living with symptoms, research, hope for treatments, and the recent Fighting the Rare documentary. It is out now on Youtube and Spotify.