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Archives for: October 5th, 2015

Narcolepsy Network

Written by Lisa Sencen on October 5, 2015

The Narcolepsy Network is a national voluntary organization that was formed to serve the needs of people with narcolepsy. Narcolepsy Network is gearing up for their annual conference which will be taking place this coming weekend, October 9-11 in Minneapolis, Minnesota. Click here to learn more about the… Read More

Dravet Syndrome Foundation

Written by Lisa Sencen on September 28, 2015
Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions. By offering research grants for syndrome-specific research with a novel approach, DSF can move researchers and the medical community forward to… Read More

HLRCC Family Alliance

Written by Lisa Sencen on September 21, 2015
This week’s spotlight member at NORD is the HLRCC Family Alliance. Their main goals include:
    • To teach patients how to take control of their own health once they are diagnosed.
    • To provide medical professionals with a convenient summary of the latest information available on HLRCC, and how best to manage the health… Read More

The LAM Foundation

Written by Lisa Sencen on September 14, 2015

1.)    What does it mean to you personally to be a patient organization serving the rare community?

We bring hope to women who have Lymphangioleiomyomatosis or LAM, a frequently fatal lung disease that affects primarily women in their childbearing years. In 20 short years, The Foundation has played a vital role… Read More

NTM Info & Research Inc.

Written by Lisa Sencen on August 31, 2015

NTM Info & Research Inc.’s mission is to save and improve lives through research, education, early detection, and improved treatments for people with pulmonary nontuberculous mycobacterial (NTM) disease.

1.)   What does it mean to you personally to be a patient organization serving the rare community?

Our work means building awareness in the medical… Read More