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Patient organisation round up, October 2016

Patient organisation round up, October 2016

Check out what some of the members of our patient organisation network have been up to in recent weeks.

Picture: the Alpha-1 Foundation in the USA gears up for Alpha-1 Awareness Month

SOLIDARITY EVENT FOR CYSTIC FIBROSIS

Fundación Respiralia, the Spanish Cystic Fibrosis (CF) patient organisation, brought together 409 participants for their annual Solidarity Kilometers against CF event on 25 September, 2016.

Participants walked, ran or rollerbladed whatever distance they were able to, allowing people of all ages and abilities to take part.

Read more.

LAM ACADEMY’S ANNUAL MEETING

Members of LAM (lymphangioleiomyomatosis) Academy will meet on 12 November, 2016 in Stockholm, Sweden, for their annual meeting.

They will discuss a range of issues relating to LAM including the latest research news, oxygen treatment, and exercise and LAM.

Read more (in Swedish).

NEW TRAINING FOR CYSTIC FIBROSIS PHYSIOTHERAPISTS

From 16–18 September, 2016, physiotherapists in Spain had the chance to gain a level 1 qualification in Autogenic Drainage thanks to a training course organised by Fundación Respiralia.

This will help ensure that health professionals are trained in a key treatment for CF and increase access for patients.

Read more.

ALPHA-1 UK SUPPORT GROUP’S 15TH ANNUAL SOCIAL GATHERING AND INFORMATION DAY

Patients and families affected by Alpha-1 antitrypsin deficiency came together to share their experiences and hear the latest developments in Alpha-1 research, treatment and care at the annual Alpha-1 UK Support Group meeting.

The group were delighted that leading experts and industry representatives were able to join them to share knowledge and answer questions from people with Alpha-1 and their families.

Read more. 

NEW AUSTRALIAN ASTHMA HANDBOOK PUBLISHED

The National Asthma Council Australia has updated its handbook for primary care health professionals, building on best-practice to provide evidence-based guidance for managing asthma.

The handbook includes a handy wall chart of available asthma treatments and new advice on e-cigarettes.

Read more.

ALPHA-1 FOUNDATION PLANS FOR ANNUAL AWARENESS MONTH

Throughout November the Alpha-1 Foundation in the USA will bring people with Alpha-1, their friends and families together to hold educational events, participate in fundraisers for research to find a cure, and share their stories about living with the condition as part of Alpha-1 Awareness Month.

Read more.