NLHet programma duurt van 11.00 tot uiterlijk 15.00 uur.
De zaal is open om 10.30 uur.
U kunt zich opgeven via de websitelink
Sprekers zijn onder andere:
Ingrid Wegman, Pulmonologie verpleegkundige in het OLVG te Amsterdam
Simone das Dores, klinisch Psycholoog in het OLVG te Amsterdam.
Graag tot ziens op 12 mei a.s.!
Met vriendelijke groeten, mede namens het bestuur,
Lida Naber, coördinator
Longfibrosepatiëntenvereniging
31 mei wereld niet rokendag
Vandaag wordt wereldwijd aandacht besteed aan de ‘Wereld Niet Roken Dag’. Deze dag werd in 1987 in het leven geroepen door de World Health Organization (WHO) om meer aandacht te vragen voor de gevaren van roken. Ieder jaar wordt er aan deze belangrijke dag een thema gekoppeld. Dit jaar is dat ‘plain packaging’. Vandaag wordt er daarom, namens de Hartstichting, KWF Kankerbestrijding en het Longfonds, een brief met infographic gestuurd naar de kamerleden om het belang van plain packaging te benadrukken bij het beschermen van kinderen tegen de verleiding om te gaan roken.
In de derde week van september is de Internationale Longfibroseweek 2017.
Rondom en tijdens deze week organiseren centra in het hele land en in samenwerking met de patiëntenvereniging extra patiëntenvoorlichtingsdagen.
Op woensdag 20 september zal Mirjam van Manen haar proefschrift, getiteld: ‘Clinical Outcomes in Interstitial Lung Diseases, Measuring and Improving Quality of Life’ in het openbaar verdedigen.
Na de plechtigheid volgt een receptie ter plaatse.
Accreditatie is aangevraagd.
Patient Benefit Conference
The Patient Benefit Conference is an innovative meeting where patients and experts will collaborate to identify science driven solutions to the most important physical and mental health issues LAM patients face every day, and develop plans to tackle those that can potentially be solved in less than five years. The conference will offer funding opportunities to promising proposals that present solutions.
Based on the RESULTS OF A SURVEY taken by individuals with LAM and LAM clinic directors, this unique conference format will offer an opening plenary session where all attendees will hear directly from patients about the most challenging aspects of living with LAM, along with clinical and scientific updates referencing how these issues are being studied and what solutions may already be in development.
Educational and Solutions Workshops will welcome a wide range of participants, including patients, scientists, clinicians and thought leaders. They will be tasked with learning about issues that patients want solved in the short term and then developing and refining proposals to identify new studies, products or services that address these issues. Some examples of proposed projects include new ways of predicting disease progression, assessing disease severity, addressing the nature of fatigue in LAM, improving supplemental oxygen delivery and helping with the fear and anxiety that accompanies LAM.
LAMposium LA
LAMposium LA, the traditional LAM patient and family conference, will run concurrently with the Patient Benefit Conference and will offer educational sessions led by LAM experts. Attendees will have the option to choose between LAMposium LA sessions and Patient Benefit Solutions Workshops.
LAMposium LA topics may include:
- LAM 101
- Chest Pain and LAM
- Getting the Most Out of Your LAM Clinic Visit
- Pneumothorax: What to Watch Out for and When to Have Pleurodesis
- How to Decide Whether to Start Medications for My LAM
- LAM Research at the NIH
- LAM Clinical Trials – How Do I Decide?
- Lung Transplantation: Navigating the Journey
- Energy Healing: A Personal Journey Towards Wellness
Breath of Hope Gala
Join us Saturday night for an evening of hope, inspiration and generosity during one of The LAM Foundation’s biggest fundraisers of the year. Enjoy the Silent Auction, Rose Ceremony, Fund A Cure, dinner, drinks, and dancing while celebrating with your friends, family and LAM researchers. The Gala is included in your conference registration. For more details on the Breath of Hope Gala, CLICK HERE.