Watch: LHON & the Family Webinar and Video

As part of LHON Awareness Day, IMP held a webinar inviting people to share their experiences of living with LHON and the impact on family members.

You can watch the recording of the webinar by clicking here

 

 

 

We have also released a video that helps people gain more insight into the impact of living with LHON, both for patients and their families. You can watch this moving video by clicking on the image or clicking here

To find out more about LHON, read our page

To find out more about World Mitochondrial Disease Week and LHON Awareness Day, click here

Tuesday 12 September 2023 is TK2d Awareness Day! 

How you can help

Get social! Share our posts or create your own.  We're excited to share with you our brand new 2023 TK2D Awareness Day infographic and we'd love for you to share this across your networks.

Click to download the English version , or follow the links for versions in Italian, Spanish, and German:

Download in German

Download in Spanish

Download in Italian

 

 

 

 

Use the infographics to share key messages about mito on your social media channels, and don't forget to use #TK2dAwareness and #WorldMitoWeek to join the conversation!

Feel free to also use our 'Rare, but worth the share' TD2K infographic, which we use all year round (click on a link below)

 

   

Click to download the infographic in French

Download in Spanish

Download in German

Download in Italian

Download in Portuguese

 

 

 

We have also produced a factsheet to help people understand Thymidine kinase 2 deficiency (TK2d) 

 

To download the Understanding TK2D Factsheet in English, click here.

Download in French

Download in German

Download in Italian

Download in Spanish

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

You can find more information at www.tk2d.com

 

World Mitochondrial Disease Week, Raising Awareness for Mitochondrial Disease. 18-24 September 2023

 World Mitochondrial Awareness Week 2023 Logo

World Mitochondrial Disease Week raises awareness of mitochondrial disease (mito) on a global scale through educational, fundraising and advocacy activities.  It includes LHON Awareness Day and Light Up for Mito. This year's awareness week ran from 18 - 24 September 2023. 

This year the theme of World Mitochondrial Disease Week was fatigue.

Everyone has mitochondria in their cells. They are like our batteries and provide 90% of the energy needed for us to live. When your mitochondria don’t work properly it can be life threatening.

One of the main symptoms across most of the 400+ types of mitochondrial disease is fatigue.

 Visit the World Mitochondrial Disease Week website to learn more about the events involved.

  

LHON Awareness Day - Watch our webinar: "LHON and the Family"

On LHON Awareness Day (19 Sept 2023) , we held an interactive webinar where we explored how the disease affects both those living with LHON and their families. LHON can have a devastating effect on patients – but it doesn’t stop there. The impact on family members can be overwhelming.

We were joined by over 40 people as we discussed and heard from those living with LHON. To watch the recording click here

 

Vision loss oScreen shot showing a family waving. The image is taken from a video titled 'LHON and the Family' with a link to the YouTube videoccurs most frequently to young people, often as they are planning their future. Dreams of careers and independence may be shattered. The excitement of driving a car comes to a screeching halt. This period can be terrifying – both for the patient and for their family. Anger, guilt and depression are just some of the emotions that may all be experienced. Trying to navigate the new reality can take a huge toll on everyone.

But over time, acceptance grows and life continues. LHON may close some doors, but there are many others that you can open, go through and find happiness and success – it may just look a little different from what you planned.

Watch this moving 20min video where patients and their family members describe life with LHON

 



Image of Bulgarian town with green light shone from the monument at the top of the hillLight Up for Mito - 23 September 2023


This year over 300 monuments participated in Light up for Mito! We'll be collecting images of this amazing global event and they'll be available to view here soon. 
 

 

Facebook icon   Social media

Use our hashtags to see what our partners and friends were up to during Awareness Week! 

#WorldMitoWeek #lightupformito #mitochondrialdisease #mito

 

Mito Facts

We produced an easy to use toolkit of images, graphics and social media messaging for Awareness Week. Anyone who would like to use and promote the content can download the toolkit to help them share our Mito Facts on social media. The Mito Fact cards can be used as they are, translated or used as a template. 

Click here to download the Mito Facts social medial toolkit


  
Photo of a toddler on a scooter wearing a back to front baseball hatFaces of Mito

We invite people affected by mito to share their stories with us. This is an important and powerful way to increase awareness of mito.  To view these stories, click here or visit the Facebook and Instagram pages.

If you'd like to offer your story, we'd love to hear from you. This email address is being protected from spambots. You need JavaScript enabled to view it.
 

 

Image depicting globe with connections

Patient and clinical registries are invaluable resources for researchers and patient organisations. Data about symptoms, care and the demographics of patients are just some of types of information collected around the world.

The need for improved sharing of information and opportunity for cohesion amongst stakeholders was the driving force behind a project to map the registries around the world.

Working in partnership, IMP and UCB, completed a review of publicly listed patient-driven and clinical umbrella registries related to mitochondrial disorders. The poster below was presented at the UMDF Symposium in the USA in June 2023.

The mapping project provides a central resource of currently available data within the global umbrella disease registry environment. 

Click here to download the PDF. 

IMP thanks UCB for their support of this project.

To read more about the Global Mitochondrial Disease Patient Registry, click here.

Graphical representation of a head and brain

Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.

Today is Rare Disease Day! We are inviting everyone to share their colours and raise awareness for the 300 million people living with a rare disease around the world. By coming together to advocate for change, we can achieve equitable social opportunity, healthcare, and access to diagnosis for people living with a rare disease.

Across the globe, the international community has organised events ranging from home, office and building illuminations to tea parties, conferences, policy events, contests and many more! To discover all of them, take a look at the interactive world map of Rare Disease Day events.


This 28 February, share our Official Rare Disease Day video to spread our call for equity!

 

 

 

Find out more about Rare Disease Day.

© 2024 Int. Mito Patients