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A link to all presentations can be found here.
Here is an overview of the presentations from LAMposiumDC:
LAM 101
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The New Zealand LAM Charitable Trust was founded in 1999 by Bronwyn Gray and communicates with nearly 20 women with LAM. The home office is located in Auckland, New Zealand with one full-time employee, a voluntary coordinator and fundraiser and an eight member voluntary trustee group. The LAM Charitable Trust works closely with Scientific Advisor, Professor Merv Merrilees and Medical Advisors, Professor John Kolbe from the University of Auckland along with Dr. Christine Forster.
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LAM-Netherlands was founded in 2010 by Ine van Meijeren and communicates with 60 women with LAM. The headquarters for LAM-Netherlands is in Wijk and Aalburg. The organization is run by four volunteers, when needed, they ask for help from local women with LAM and their families.
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FLAM Association (France Lymphangioléiomyomatose) was founded in July 2001 by Michèle Gonzalves and communicates with approximately 160 patients. The head office is based in Gosselming (Moselle, department 57). The Council has 10 members, all volunteers.
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Alambra, the Brazilian association for Lymphangioleiomyomatosis patients, was founded in 2004 by Simone Garcia Ribeiro and Flávia Patitucci Sobroza. There are currently 120 LAM patients registered in the database of the Clinics Hospital of the Faculty of Medicine of the University of São Paulo.
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LAM Academy is a joint project between the Department of Respiratory Medicine and Allergy at the Karolinska University Hospital in Stockholm, Sweden, LAM patients and their relatives.
LAM Academy was founded in 2008 by LAM patient Anette von Koch and Medical Advisor Maryam Fathi, MD, PhD, from Karolinska University Hospital. LAM Academy communicates with more than 55 LAM patients. As there are less than 10 million inhabitants in Sweden, around 10 women per million are diagnosed with LAM.
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Can't decide whether to attend LAMposium DC, LAMposium LA or both? Keep reading to learn about highlights for each conference and more information to help you make your decision.
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My biggest fear when I was growing up (other than sharks of course) was always that I would grow up and be ordinary. For as long as I can remember, something in my gut always told me that I was destined to do something unique and amazing. Little did I know that I would, in fact, become extraordinary, just not for the reasons I wanted.
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I learned a lot of great lessons during my time ‘on the Hill’. I learned that my congressional representatives want to hear from their constituents about what matters to them. I learned that even though they may not understand what LAM is, they want to learn and want to help. And I learned that if you are visiting your representatives on the Hill, you should DEFINITELY wear comfortable shoes.
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The TS Alliance, in partnership with The LAM Foundation, is sponsoring a Patient-Focused Drug Development Meeting (PFDD) with the FDA on June 21, 2017, at the Hyatt Regency on Capitol Hill in Washington, DC, from 8:30 a.m. to 4:30 p.m. The purpose of this meeting is for individuals affected by LAM and TSC and caregivers of dependent adults or children to communicate their perspectives on living with LAM and TSC to the FDA. This meeting is free and open to the public, and it will be webcast live online. We hope you will REGISTER and make plans to attend in person or online.
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After several months of suffering from shortness of breath, I asked a friend of mine, who is a doctor, what he thought I should do. He told me to get a chest X-ray; that is when I started to worry because my X-rays revealed that something was wrong with my lungs. He referred me to a specialist and told me to get a CT scan before going to the specialist’s office. On August 3, I was diagnosed with this rare disease I could not even pronounce: lymphangioleiomyomatosis – LAM. My pulmonologist explained what he knew about the disease and of course I was devastated.
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The obvious answer to this question is: a cure. A cure would negate every other complication caused by LAM. Indeed, finding a cure remains our number one priority at The LAM Foundation. However, in the intervening years, we know there are many questions and issues that, if solved or addressed constructively, might improve each patient’s quality of life as we endeavor to overcome the final barriers to a cure.
What would make life better for you now: hour to hour, day to day, month to month, clinic visit to clinic visit? The answers you provide to this question will set the agenda and priorities for the upcoming “Patient Benefit” Research Conference, to be held concurrently with LAMposium LA.
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