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Patient organisation round-up March 2014

Last Update 06/04/2021

Patient organisations across Europe have been organising and participating in many activities to raise awaresness of respiratory health.


Patient organisations across Europe have been organising and participating in many activities to raise awaresness of respiratory health:

Italian patient organisation host public awareness conference 

Ama fuori dal buio, an organisation for idiopathic pulmonary fibrosis, celebrated Rare Disease Day with their 7th Conference open to the public, schools, and university students. The event, supported by ELF, identified the importance of patients, professionals and the public coming together to help patients and their families feel less isolated. The conference, held in collaboration with the Centre for Rare Lung Diseases of the AOU Policlinico of Modena, included presentations from anthropology and engineering experts showing how these disciplines could improve diagnosis and support for patients in the future.

Read a full report on the event (in Italian). 

RareConnect announces launch of LAM community

RareConnect is a growing online network for rare disease communities, bringing together thousands of patients, families, and groups who might otherwise be isolated.  Through RareConnect, an initiative of EURORDIS, patients and those who care for them can communicate, sharing experiences and information in a safe, moderated online forum. With translation available at no cost to participants, RareConnect allows patients from different countries to interact in English, French, German, Italian or Spanish languages. 

The launch of LAM RareConnect, in partnership with the European LAM Federation and other LAM patient groups around the world, will enable further international networking and knowledge building around LAM. 

Medical journal interviews President of the Spanish Federation of Respiratory Diseases

In her interview with Spanish-language journal redaccionmedica (Medical Writing), M. Victoria Palomares’, President of FENAER, identifies the main challenges faced by people with lung conditions in Spain. She calls for changes to how diagnosis and treatment is provided, with specialist consultation available in primary care facilities and nurses able to assess patient’s status in medical centres. M. Palomares also calls for patients to be taught inhaler management to make sure that they get the most out of the treatments available.

Read the full interview (in Spanish).

Rare disease groups hear NHS England’s plans for UK strategy for rare diseases

The PCD Family Support Group, and the Ciliopathy Alliance attended a reception for Rare Diseases organised by Genetic Alliance UK, which works to improve the lives of patients and families affected by all types of genetic conditions.

The event on 26 February at the House of Commons was an opportunity to hear about NHS England’s plans for meeting the commitments outlined in the UK Strategy for Rare Diseases. Speakers included Earl Howe, who is the minister responsible for quality at the Department of Health, and Dr. Beverley Searle who spoke about her daughter Jenny’s experience of living with a chromosome disorder.

UK Stop Snoring Week – Stop Snoring – a sensible approach to successful treatment

National Stop Snoring Week, organised by the British Snoring & Sleep Apnoea Association, runs from 22-26 April. This year the campaign looks at how snorers can find the most suitable treatment for their individual needs. It highlights the importance of finding the cause of their snoring before they treat it, how to get the right treatment and how to avoid the pitfalls of buying products that have no value.

Visit the website for more information.

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