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October 22, 2015

TOPIC: Featured News, Advocacy, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families, Sticky Posts for Industry, Sticky Posts for Advocate, Get Involved

NORD Releases First-Ever State Progress Report for Rare Diseases

Posted at October 10, 2015 03:00 pm by Jennifer Huron

Leading Advocacy Organization Drives Health Policy Improvements for 30 Million Americans with Rare Diseases through Rare Action™ Network

With patient access to health care becoming increasingly dependent upon state policies, the National Organization for Rare Disorders (NORD)® has developed and released the first-ever State Progress Report to evaluate how states are serving the 30 million Americans with rare… Read More

October 19, 2015

TOPIC: Featured News, Research, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families, Get Involved

Rett Syndrome Research Trust

Posted at October 10, 2015 12:58 pm by Lisa Sencen

This week’s member spotlight was written by:
Monica Coenraads, Co-Founder, Trustee, and Executive Director of Rett Syndrome Research Trust.

 

“October is Rett Syndrome Awareness Month. This October also happens to be the seven-year anniversary of the launch of the Rett Syndrome Research Trust, a non-profit I started to spur research to a new phase where it will have an impact… Read More

October 12, 2015

TOPIC: Featured News, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families

Target Cancer Foundation

Posted at October 10, 2015 11:48 am 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 5, 2015

TOPIC: Featured News, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families

Narcolepsy Network

Posted at October 10, 2015 01:54 pm 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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September 28, 2015

TOPIC: Featured News, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families

Dravet Syndrome Foundation

Posted at September 9, 2015 12:04 pm by Lisa Sencen
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 find better treatments and a cure while assisting afflicted… Read More