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October 12, 2015

TOPIC: Featured News

Target Cancer Foundation

Posted by Lisa Sencen

TargetCancer Foundation promotes the development of lifesaving treatment protocols for rare cancers. TargetCancer Foundation directly supports initiatives at the forefront of cancer treatment by funding innovative research, fostering collaborations, and raising awareness among scientists, clinicians, and patients. Executive Director for TargetCancer Foundation, Jim Palma, will be speaking at the NORD Summit next week! We’re thrilled to have him speaking… Read More

October 12, 2015

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patient Stories, Patients & Members, Research

Raise Your Voice: Rare Disease Day 2016 is Coming

Posted by Jennifer Huron

Rare Disease Day Handprints Across America

Date: February 29, 2016
Global Theme: Patient Voice
Global Slogan: Join us in making the voice of rare diseases heard

By definition, each rare disease affects a small segment of the population, yet combined the 7,000 known rare diseases affect 30 million people -… Read More

October 5, 2015

TOPIC: Featured News

Narcolepsy Network

Posted by Lisa Sencen

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 must attend conference for those living with narcolepsy.

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October 5, 2015

TOPIC: Featured News, Get Involved, Research

The Undiagnosed: Orphans of the Rare Disease Community

Posted by Paul Melmeyer

While the approximately 7,000 known rare diseases run the full spectrum of symptoms and experience, rare disease patients encounter many common obstacles. Rare patients face incredible difficulty finding safe and effective treatments, and even if such treatments exist, a multitude of reimbursement difficulties await.  Rare disease patients often wait years for an accurate diagnosis, as the medical community may… Read More