Welcome to the LOA/LHON group of the Eye Association Netherlands!

For more information: https://www.oogvereniging.nl/oogaandoeningen/oogaandoeningen-overzicht/loalhon/

28 February Rare Disease Day 2019 

Download the official Rare Disease Day 2019 poster to display at your events, workplace or home and raise awareness of the impact of rare diseases in your community. The Rare Disease Day poster is available to download in the following formats and sizes:

  • For Web: Available in three sizes (JPG)
  • For Print: Available in two sizes (PDF) as well as one 60 x 80.pdf with a blank white space to fill in your event details
  • For Designers: (with these files, the slogan is customisable to translate into your own language): Available in two sizes (PSD) with a 60 x 80 with a blank white space to fill in your event details.

The poster features Filip who lives with achondroplasia and his mother Alina. Filip also features as one of the three patient testimonial videos filmed for this year’s campaign (coming soon!) Find out more about Filip’s story of living with a rare disease.

The theme for Rare Disease Day 2019 is ‘Bridging health and social care’; this year’s campaign focuses on the need to better coordinate all aspects of care to improve the lives of people living with a rare disease.

Still looking for ways to get involved on the big day? Check out all the different ways you can join in this year’s campaign!

You can also download the official Rare Disease Day logo and other campaign materials to use during your Rare Disease Day activities.

 

14th of January 2019

RareConnect, an initiative of Eurordis, has recently created an online community for mitochondrial diseases in close collaboration with a mother and patient advocate. This community is meant to be for all those affected by mitochondrial diseases and especially for all those who don't have an identifiable genetic mutation. 

The highlights of the community are:

- It is available in 12 languages

- It offers peer-to-peer support

- A translation system guarantees the translation of all posts and stories

- It represents a meeting point for families that do not speak English or cannot count on any patient associations within their reach

RareConnect/Eurordis aims to transform this community into a place that can fulfil the needs as a patient or caregiver, where they can have meaningful connections with other members worldwide.

There are still many people living in all regions of the world that have yet to be properly diagnosed with a mitochondrial disease as not everyone has identifiable genetic mutations. RareConnect is reaching out to patients who wish to share their stories of diagnosis and personal life experience. Stories can be submitted anonymously to your community. Story submissions will assist others in their journeys. Availability of testimonies, awareness and educational resources for Mitochondrial diseases will assist in early detection and diagnosis of these disorders. 

HAVE A LOOK!

 

3rd of November 2018

At the initiative of IMP a scientific workshop on potentially harmful drugs for mitochondrial patients was organised. It took place in Amsterdam on the 1st and 2nd of November. Mitochondrial specialists/clinicians and pharmacologists from all over the world came together to reach consensus about drugs which may or may not be safe to use by mitochondrial patients, children and adults.

 

At this moment IMP publishes a list of potentially harmful drugs on the website. This list needs to be updated on the basis of new and existing scientific evidence and clinical experience. The entire workshop was sponsored by patient organisations: AEPMI, DGM, Eurordis, IMP, the Lily Foundation, MitoCanada, Mitocon and Muscular Dystrophy UK. They strongly believe that thorough and trustworthy information on drugs is essential for mitochondrial patients.

The group of experts carried out extensive research into existing scientific literature beforehand. At the workshop they discussed safety of all relevant drugs with the purpose of reaching consensus. The two-day workshop was hard work but the complete list of drugs was reviewed and their safety was discussed. The experts reached consensus on all of them. In the coming weeks they will work on a solid scientific document, to be published open access. The following step will be to develop a new table for patients and their families on the basis of the scientific document. There is still much work to do but all parties are dedicated to complete this important task.

We will keep you informed!

© 2019 Int. Mito Patients