New ICD-10 Code G40.C Lafora progressive myoclonus epilepsy Effective October 1, 2023 Providers, please use the new ICD-10 code for Lafora disease.

Announcing ICD-10 Codes for Lafora Disease

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We are thrilled to announce that newly designated, unique ICD-10 Diagnostic Codes for Lafora Disease will be effective on October 1, 2023.

Lafora progressive myoclonus epilepsy, or Lafora Disease, an ultra-rare neurodegenerative disorder affecting children, has been assigned code G40.C, falling under the G category of diseases representing nervous system disorders. 

This development marks a crucial milestone for the Lafora Disease community since we had no specific code and, therefore, no way to accurately track the disease across healthcare systems. Until now, Lafora was grouped with other epilepsy diseases that are not as severe or complex. This made it difficult for doctors, insurance companies, and policymakers to understand the urgency and unique needs of Lafora patients.

G40.C Lafora progressive myoclonus epilepsy new ICD-10 code effective oct. 1, 2023 Providers, please use this new ICD-10 code for Lafora Disease.

G40.C Lafora progressive myoclonus epilepsy. New ICD-10 code effective October 1, 2023. Providers, please use this new ICD-10 code for Lafora Disease.

 

What are ICD-10 codes?

ICD-10 codes…

  • improve streamlining insurance claims processing,
  • provide important data to healthcare professionals
  • make it easier for researchers to conduct epidemiologic research and retrospective studies,
  • determine true prevalence rates
  • recruit patients for clinical trials,
  • track outcomes of clinical interventions
  • develop protocols for standard of care.

Chelsea’s Hope is immensely grateful to have a unique code for Lafora Disease.

We urge everyone to use the newly designated G40.C ICD-10 code when diagnosing and documenting Lafora Disease cases. Our new code will help us build a more comprehensive understanding of the prevalence and impact of Lafora Disease, ultimately accelerating research efforts toward a cure. Please help us share this news!

Find more information on the codes, as well as FAQs, on our webpage HERE.

You can also read and share our press release.

Access our press release
Lafora Disease Sibling Support Group with Mariah Merriam

Interested in a Sibling Support Group?

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Chelsea’s Hope is delighted to announce the relaunch of our sibling support group, led by Mariah Merriam, to build community between siblings of those with Lafora Disease.

Are you the sibling of someone with Lafora Disease? We encourage you to fill out the interest form and download this flyer with all the details about what to expect from the program.

Image of the Lafora Disease Sibling Support Group Flyer

Mariah founded the group with the intention of providing emotional support and resources for siblings of Lafora Disease patients. She wrote:

“As the sister of two Lafora Disease patients, I understand how isolating grieving a sibling can be. That’s why I founded the sibling support group with Chelsea’s Hope! I hope you will join us in this journey to support one another in our unique experience as siblings.”

Are you interested?

We need to know how many people to expect in the group as we plan. The first step is to please fill out the interest form. Mariah will contact you and add you to a group chat. Next, you can meet her in a low-stress, informal environment before deciding if you’d like to join the Zoom meeting with others. The primary language for the group sessions will be English, but everyone is welcome! We will have a chat with translation capabilities and will do everything we can so language is not a barrier to participation. Also, you can email Mariah with any questions about the group.

Watch a video explaining the Sibling Support Group.

Please note: The program is only for Lafora Disease siblings. You must be age 13+. Parents are welcome to fill out the interest form on behalf of their children.


Fill out the interest form

The background is bright yellow. On the left is a child with blue face paint. To the right is another child, who has red, white, and black face paint on, Between the children, the text reads, 'FACE it To make childhood dementia impossible to ignore'.

FACE it Campaign

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The background is bright yellow. On the left is a child with blue face paint. To the right is another child, who has red, white, and black face paint on, Between the children, the text reads, 'FACE it To make childhood dementia impossible to ignore'.

On September 20th, 2023, Chelsea’s Hope will be joining Childhood Dementia Initiative in the FACE It campaign! September 20th is Childhood Dementia Day, meaning it’s the perfect opportunity to make childhood dementia Impossible To Ignore. We invite you to join by painting your face or having fun with make up. Together, we’ll draw attention to childhood dementia.

One of the most pressing issues regarding childhood dementia is that many people don’t know that it exists. It is a symptom of Lafora disease that eventually affects every patient, listed with others on our About Lafora Disease page. Childhood dementia affects an estimated 700,000 people, and sadly, most children with dementia pass away before their 18th birthday.

In the rare disease community, opportunities to share with friends, acquaintances, and peers outside of the community can be crucial. According to Dementia Australia, childhood dementia is caused by more than 100 different rare genetic conditions.

Spreading awareness helps families, researchers, and medical professionals in supporting patients and developing a cure.

Check out the Chelsea’s Hope social media accounts on September 20th, a.k.a. Childhood Dementia Day; we’ll share photos of us FACING it to raise awareness. Learn more about the FACE It campaign on Childhood Dementia Initiative’s web page.

Download our poster to share
Text says 'Lafora Disease Therapeutic Overview presented by Dr. Kit Donohue'

Lafora Disease Therapeutic Overview

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We invite you to watch a video and read a page about the Lafora Disease Therapeutic Overview as of August 2023.

Are you wondering if there are future therapy options for Lafora Disease? Also, what treatments are in progress?

At last week’s event, Ask the Experts: A Q&A for Lafora Families, Chelsea’s Hope Science Director, Dr. Kit Donohue, shared an overview of treatment options in the pipeline. We are happy to share a short recording from the Q&A, as well as a PDF page with information from the presentation slideshow.

If you registered for the event, we’ve already sent you the full recording and handout. Make sure to check your email!

Watch Lafora Disease Therapeutic Overview on YouTube

We hope the Q&A was informative and that participants could get their questions answered. Our team will work on creating handouts on Lafora Disease stages and on the importance of testing siblings of Lafora Disease patients. Please let us know if there are other resources we can provide to help you navigate living with Lafora.

Finally, Chelsea’s Hope is grateful for any volunteer who can translate materials from English to other languages. We encourage you to fill out the volunteer interest form if you can assist us.

Access the Lafora Disease Therapeutic Overview video captions in English HERE.

Access the transcript in Italian HERE.

Please email Dr. Donohue if you have any follow-up questions from the Q&A.

Download Therapeutic Overview PDF