July 2014 LAM News Update


LAM Patients and their families in New Zealand and medical and lay communities wanting up to date LAM research, patient stories and information here and around the world are invited to look at the latest information from the newly created Link "RARE CONNECT".

The New Zealand LAM Trust is a member of Rare Connect.


LAM Community on RareConnect
This is an opportunity for LAM patients, families and interested others to join and connect with new information and to be in contact with the fast growing global LAM Community. We are grateful to the work of Robert Pleticha of the European Rare Disease Organisation and support group" EURORDIS" and to Iris Bassi, founder of LAM Italia. The next international meeting of the European Respiratory Society will take place in September 2014 and LAM will feature highly on the programme. Patients are invited to join the Global LAM Community and to share information, read the latest scientific papers, and hear patient's stories from around the world.

www.RareConnect.org

LAM Community on RareConnect
Data below is from February 27th to July 15th 2014

Who has visited the LAM Community over the past 3 months?
1,369 unique visitors

What do they do when they visit?
These visitors visit 3.43 pages on average

These are the most visited pages of your community:

https://www.rareconnect.org/en/community/lymphangioleiomyomatosis/forum/topic/lam-symposium-advances-in-care-for-patients-with-lymphangioleiomyomatosis-lam
https://www.rareconnect.org/it/community/linfangioleiomiomatosi/forum/topic/lam-patient-priority-setting-workshop-and-lamposium
https://www.rareconnect.org/en/community/lymphangioleiomyomatosis/forum/topic/sirolimus-receives-fda-orphan-drug-designation
https://www.rareconnect.org/en/community/lymphangioleiomyomatosis/forum/topic/recently-diagnosed-with-lam-disease
https://www.rareconnect.org/en/community/lymphangioleiomyomatosis/article/petra

Where are visitors coming from?

Top 10 countries with most visitors:

1. United States 327
2. Italy 222
3. Spain 162
4. United Kingdom 113
5. Germany 90
6. France 82
7. Australia 47
8. Belgium 36
9. Sweden 33
10. Switzerland 24

How are people finding the community on search engines?

Top 8 keywords (the words people use on a search engine to find the community):

1. linfangioleiomiomatosis
2. diseases lung
3. lung disease lam
4. lamposium
5. aelam
6. rare connect
7. linfoma
8. afectadas por lam

How did visitors find the community?

1. google 370
2. m.facebook.com 256
3. facebook.com 234
4. surveymonkey.com 204
5. (direct) 164
6. twitter.com 22
7. europeanlung.org 10
8. mail.ersj.org.uk 7
9. col126.mail.live.com 5

Social Media

You can subscribe to an interest list of LAM Disease group Facebook pages here
While you are there, please follow our page: http://facebook.com/rareconnect and find us here on Twitter: http://twitter.com/rareconnect

1st June 2014... LAM Awareness Day

Start donating to the LAM Trust for the LAM Awareness Day:




April 2014... LAM Chat with Dr Frank McCormack in Chicago

LAM Trust Director Bronwyn Gray chats to Dr Frank McCormack at the LAM Scientific and Patient Conference in Chicago 28-30 March 2014.


Postgraduate Scholarship - lymphangioleiomyomatosis (LAM) pathogenesis - in Sydney

Sydney's premier respiratory research team, located at the Woolcock Institute of Medical Research, are looking for a PhD student with a passion for respiratory research to join our team to investigate the pathophysiology of LAM.

This project will be part of a joint endeavour between the University of Sydney, Australia and our collaborators at the University of Auckland, New Zealand and will be supervised by Senior Researchers at both Universities.

The scholarship stipend is AU$25,000 pa (tax exempt) with an opportunity for additional support to attend national and international conferences subject to satisfactory progress.

> Please see the full description here.


January 2014... A New Year for LAM Research

The New Zealand LAM Trust announces a new three year LAM research and investigation collaboration involving the Universities of Auckland and Sydney.
Professor Merv Merriees from Auckland and Professor Janette Burgess from Sydney will work on the new project due to begin in the first half of 2014.
The work will involve the funding of a PHd student and the project will take place at both Universities.
Funding for this exciting new project will be shared by the New Zealand LAM Trust and by the University of Sydney.

International Rare Disease Day will be on Friday 28 February.
Along with thousands of rare disease support groups, the New Zealand LAM Trust supports this global initiative and welcomes on line donations

Registration is now open for the 17th International LAM Scientific and Patient Conference ; this year the meeting will be held in Chicago, Illinois :
March 27 - 30 2104.

For registration or expressions of interest please contact Sally Lamb
slamb@thelamfoundation.org


October 2013 News:

The 2014 International LAM Science, Research and Patient Conference will take place in Chicago USA: March 28 - 30

All LAM researchers, patients and their families are invited from New Zealand to join more than 400 visiting patients, physicians, researchers and supporters from the USA, Canada Europe, South America, Australia and Asia in Chicago next year.

So Save the Dates and further details will be posted about the venue and the scientific and patient programmes.


DONATE ON LINE:

Thank you to those supporters who donated during September towards our research programme by using the online donation system on our website.

These funds will be used to support funding for a Summer Studentship at the University of Auckland.

Contact us:

Director: NZ LAM Trust
Bronwyn Gray
Auckland
09 376 4936
Secretary: New Zealand LAM Trust
Jan Barrett
Auckland
09 3786 605
General Practitioner Advice
New Zealand LAM Trust
Dr Christine Forster
Freemans Bay Medical Centre
09 378 6653


Welcome to the New Zealand LAM Charitable Trust

Established in Auckland in 1999, the New Zealand LAM Trust is one of a number of patient and family organisations around the world working alongside scientists, clinicians and researchers, raising awareness about the disease Lymphangioleiomyomatosis and helping raise funds to support research into its cause and ultimately its cure.

» OUR CHALLENGE

  • To help to transform the vision of a future without LAM into a reality
  • To intensify our efforts to raise funds for scientific research
  • To educate general practitioners to recognise early symptoms of LAM
  • To identify and provide support for every LAM patient in New Zealand.

» OUR OBJECTIVES

  • To provide support for persons diagnosed with LAM and their families
  • To become the source of information for persons affected with LAM
  • To publish educational materials on LAM for all interested individuals
  • To raise awareness of LAM, to improve early detection and diagnosis
  • To maintain a database of persons throughout the country who have LAM
  • To foster and fund research aimed at finding a cause of and cure for LAM and ultimately, preventative measures
  • To sponsor conferences, workshops and scientific meetings related to LAM
  • To raise money to support the goals.

With support for New Zealand women suffering from LAM and fundraising for research as the central focus, the New Zealand LAM Trust is committed to the above challenges.




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