In the coming weeks the National Alliance for Rare Diseases will be inviting all Maltese candidates for the European Parliament Elections to join it and the European Association for Rare Diseases EURORDIS, in the work that is needed to draw up a European plan that integrates together care and support for patients with rare diseases.
Mrs. Michelle Muscat, President of the National Alliance for Rare Diseases, said this at the launch of the Annual Campaign for Rare Disease Awareness for this year. This message was echoed by Mr. Yann Le Camm, EURORDIS CEO, in a letter sent to the Rare Diseases Malta on the occasion of the launch of the 2024 Rare Diseases Campaign.
Mrs. Muscat said that in this case there is no partisan politics and the Alliance hopes that the candidates of all political parties will accept its invitation. This will help 00patients to have access to the best treatment, care and research.
The Alliance strongly believes that with more widespread awareness and a coordinated effort, concrete results can be achieved for patients and their families. Mrs. Muscat spoke about the collaboration that exists with the Chinese authorities and the work that is being done to start contacts with large hospitals in China in order to establish relationships that can be of benefit to other Maltese patients.
Mrs. Muscat said that the Alliance will continue to help as many patients with rare conditions as possible to have access to research which is often the only hope for them. During this year Chinese medicinal therapy will continue to be given to patients who are members of the Alliance at the Mediterranean Center for Traditional Chinese Medicine in Kordin.
Mrs. Muscat added that the Alliance will be focusing also on schools to convey information about these conditions and show the value of careers in medicine, science and research. This will be done through an educational pack created in collaboration with the Orphan Health Care Foundation for Rare Diseases in Switzerland.
The President of the National Alliance for Rare Diseases also thanked the Minister of Health Jo Etienne Abela for his presence, for the first time after four years. She added that this is a very good sign from the Government showing that it is paying attention to this minority of patients. Mrs. Muscat stressed that the Alliance looks ahead to discuss with the Government a national strategy on rare diseases in the coming months.
The conference which took place under the Patronage of the speaker, was also addressed by the Minister of Health Jo Etienne Abela, by Profs Alex Felice, Dr. Chris Barbara, Hon. Ian Vassallo and Deputy Speaker David Agius.
——
The Deputy Speaker of Malta’s House of Representatives and MP David Agius inaugurated the National Campaign on Rare Diseases in Malta, organized by the National Alliance for Rare Diseases. The primary aim of this campaign is to raise awareness among the people of Malta and Gozo regarding the challenges faced by individuals affected by rare diseases in our country.
Approximately 8,000 medical conditions are classified as rare diseases, and their unique nature makes it challenging for healthcare professionals to be well-versed in these health conditions.
Rare diseases often manifest as chronic, progressive, and various types of uncommon cancers, leading to physical disabilities and premature deaths, especially at a young age. This poses a significant challenge for public health authorities in our country and globally, with an estimated 30 million individuals in Europe affected by rare diseases.
In recent years, in collaboration with the National Alliance for Rare Diseases in Malta, Public Health Authorities have implemented crucial measures. These include neonatal screening, establishing a National Registry for Rare Diseases, enhancing the “Orphanet” informational website for use by doctors, patients, and their families, coordinating local medical care for patients with rare diseases, including specialized care in recognized medical centers abroad, and providing a social support framework for patients and their families.
The Parliament of Malta consistently supports and collaborates with the National Alliance for Rare Diseases in its advocacy for those affected and their families. Recognizing the importance of national funding for medical and scientific research, the Parliament emphasizes the need to increase awareness about rare diseases and improve the effectiveness of treatments for patients.
These programs require sustained support to yield the desired outcomes for everyone involved. The Deputy Speaker highlighted that caring for those with rare diseases reflects compassion towards fellow human beings.
On this occasion, the Minister for Health and Active Ageing, Jo Etienne Abela MP, and the Shadow Minister for Primary Care and Mental Health, Ian Vassallo MP, also participated in the event.
#MaltaDaily
