Skip to main content

Medical News

23/4/2019

FibroGen announced that FDA has granted Orphan Drug Designation for the company’s anti-CTGF antibody, pamrevlumab, for the treatment of people with Duchenne. Visit the link for the press release: https://www.globenewswire.com/news-release/2019/04/15/1803865/0/en/FibroGen-Receives-Orphan-Drug-Designation-from-the-U-S-FDA-For-Pamrevlumab-for-the-Treatment-of-Duchenne-Muscular-Dystrophy.html?culture=en-us

28/3/2019

Below you are welcome to read positive announced today by Sarepta Therapeutics regarding Casimersen (SRP-4045) for Duchenne Muscular Dystrophy. 

https://drive.google.com/file/d/1e7g97HOBWpuUj3sUjzSt5VMoAEN8RoHQ/view?u...

8/3/2019

Following the link below, read the article about how powered standing wheelchairs promote idepedence, health and community involvement in adolescents with Duchenne muscular dystrophy by the expert team of Vorster et al. 

https://drive.google.com/file/d/1YddekSn7M6BSWgR1O7f2MJ1w2NjmTqbN/view?u...

7/2/2019

We are excited to announce that MDA Hellas has been officially aprroved to be a member of EURORDIS. With over 800 direct member organisations, EURORDIS is recognised and listened to as the European organisation specialised in the needs of patients with rare diseases and its main goal is to bring together all patient associations and provide people with rare diseases with a strong and unique voice.  

23-25/11/18    Duchenne Patient Academy 2018,  ​President Hotel Athens

The Duchenne Data Foundation is planning an Educational Program through its Duchenne Academy that will last 6 months, and will be opened by an international workshop that will be held in Athens on Friday 23 to Sunday 25 November 2018.

Along the three days, the training workshop will involve patient groups, experts, and companies from different countries of the world who are part of the DMD community, discussing the following topics:

  1. Industry updates
  2. Clinical updates (e.g. on the standards of care)
  3. Community education through advocacy, fundraising, volunteering and community engagement

For further information please contact the following link : https://worldduchenne.org/duchenne-data-foundation-present…/

 

8/11/18

Myonexus Therapeutics announced the beginning of a clinical trial for β-sarcoglycanopathy for the first time in gene therapy history (Limb Girdle Muscular Dystrophy LGMD2E).

Visit the following link for details from the press release: http://myonexustx.com/

 

21/11/18  7th Patients in Power, Divani Caravel Hotel, Athens

The 7th Patients in Power was held on Wednesday, November 21st, 2018 at the Divani Caravel Hotel in Athens. This year, the work of the conference focused on the next day, in place of patients against the new trends and challenges. The goal of the conference was to bring patients together across Greece to share their opinions, experiences and coordinate their action to solve their common problems, despite of the different diseases. Vision and empowerment of patient associations !!!

For more information, visit: http://www.boussiasconferences.com/default.asp?pid=86&la=1&confID=782.

 

18/10/18  

1. The pharmaceutical company Sarepta Therapeutics announced its collaboration with the Nationwide Children's Hospital for the clinical testing of its gene therapy in Characot-Marie-Tooth Neuropathy type 1A in 2019.

Below you can visit the company's website and the corresponding press release:  

http: //investorrelations.sarepta.com/news-releases/news-release-details/ ...

2. In the following link you will find the recently published report on the development and development of clinical trials of Micro-Dystrophin Gene Therapy for Duchenne Muscular Dystrophy:

https://www.cell.com/molecular-therapy-family/molecular-therapy/fulltext...(18)30336-8

 

11/10/18

Recently, the encouraging results of the Phase I clinical trial of TAS-205, Taiho Pharmaceutical Co., Ltd., have been published. It is a promising inhibitor of an enzyme involved in the mechanism of the inflammatory reaction.

In the following link you shall find the results:

https: //drive.google.com/file/d/1Nu0qNR-Ijt6n5d_KTf9rawpZsPUeIrVP/view? U ...

 

21/9/18

The Pharmaceutical Company Sarepta Therapeutics announced the negative response received by the CHMP Committee of the European Medicines Agency EMA in relation to Eteplirsen.

For more details, please visit the Company's press release:

http: //investorrelations.sarepta.com/news-releases/news-release-details/ ...

 

20/9/18

In the links following you will find two recently published articles on Duchenne Muscular Dystrophy:

1. Muscle miRNAome shows suppression of chronic inflammatory miRNAs

with both prednisone and vamorolone: https: //drive.google.com/file/d/1bWL_7UzyFDQV2WrbUlqUMmqGEHB8uYir/view? U ...

2. Body composition and body mass index in Duchenne muscular dystrophy: The role of dietary intake. https: //drive.google.com/file/d/16tzGGRVqtsUBvhXxofXt-szc4QtacPup/view? u ...

 

12/7/18

On 9/7/18, the Pharmaceutical Company Catabasis announced the design of phase 3 of POLARIS DMD with the edasalonexent, drug in Duchenne Muscular Dystrophy patients, and is expected to begin in the second half of 2018. Read on below:

1. Introducing the POLARIS DMD Trial: https: //drive.google.com/file/d/1x89MOvGP3rgBBTyqu-Vp8ybrieEEk0wk/view? U ...

2. Catabasis Pharmaceuticals Announces Plans for Edasalonexent Phase 3 POLARIS DMD Trial in Duchenne Muscular Dystrophy: https: //drive.google.com/file/d/1h2MIkOPuX9dbWsx1VEzMS9BmMz0_Gwis/view? U ...

 

5/7/18

Following the link below you will find an article about diet in Duchenne Muscular Dystrophy, as it was recently published: https: //drive.google.com/file/d/1hvT_w19poEjQEqhyFBa42wrHbJPqmTQl/view? U ...

 

7/6/18

A few hours ago, Summit Therapeutics announced the suspension of PhaseOut DMD clinical trial of ezutromid. For more information, visit the following link: http://www.utrophintrials.com/.

 

20/6/18

New Guidelines for Pediatric Physiotherapists dealing with Neuromuscular Diseases have been published and are now available. You can find the text at the link below: https: //drive.google.com/file/d/0B-AfO3xSbdQIUEozeVhWUnlYZExUdUVpNGFPemR ...

 

26/4/18

On 25/4/18, Catabasis presented with its press release new data on Edasalonexent (MoveDMD) that show a significant deceleration in Duchenne muscular dystrophy by magnetic resonance imaging (MRI) after one year of medication.

For more details visit the following link:

http: //ir.catabasis.com/news-releases/news-release-details/catabasis-pha ...

 

30/3/18

On 19-20/1/18, the 235th European Neuromuscular Center (ENMC) Workshop on " Neuromuscular Patient's Position in the Public Taking Decision" was held, attended by a representative of MDA Hellas. Summary of the page is available at the following link:

http://www.mdahellas.gr/235-enmc-european-neuromuscular-centre-workshop

 

Muscular Dystrophy Association