Today, NORD Vice President Diane Dorman is providing remarks before the FDA Oncologic Drugs Advisory Committee on the importance of distinguishable names for biologics as a fundamental core of maximizing the benefits for patients and minimizing any potential harm from biosimilars. This is part of NORD’s work to provide advocacy on behalf of the entire rare disease community. Read Diane’s remarks here and follow the conversation online under the hashtag, #ODAC.
If you have supported NORD with a donation at any time during its 31+ year history, we thank you. The wonderful work that NORD has accomplished since 1983 on behalf of rare disease patients and their families wouldn’t have been possible without the support of many caring individuals.
NORD works very hard to be a careful steward of donated funds, keeping operating costs low so that 95 cents of every dollar goes directly to programs and services for patients.
We know that you receive many solicitations for contributions at this time of year, but we believe that NORD has earned a place at the top of your list through its history of dedicated leadership and service.
And we are excited to tell you about two unique opportunities to drive progress for patients in 2015: promoting state-based advocacy through NORD’s Rare Action Network™ (RAN) and advancing research with an innovative new platform NORD has developed for patient registries and natural history studies. read more >
The diagnosis of primary myelofibrosis (MF), one of three main myeloproliferative neoplasms (MPNs), came as a huge surprise for Bill Erickson in May 2012. According to the MPN Research Foundation, patients with MF have scar tissue buildup in their bone marrow, which prevents normal blood cells from being produced. Since blood cell production is so poor in the bone marrow, the body tries to compensate by moving the process over to the spleen. For Bill, the news that his spleen had already enlarged to twice its normal size was alarming, to say the least. read more >
NORD has strongly supported the establishment and expansion of the Compassionate Allowances Program created four years ago by Social Security Commissioner Michael Astrue and his staff. This program fast-tracks the review of applications for disability assistance from people with devastating and, in many cases, rare diseases.
To illustrate the impact this program has had on the lives of many patients and their families, we are sharing with you the following story sent to us by a young wife and mother named Katie. read more >
Each year NORD provides a list of suggested activities for Rare Disease Day. This year, one of those major projects is a nationwide campaign to help leaders of rare disease patient organizations — and those who support them — educate their state officials for Rare Disease Day 2013 (Feb. 28, 2013). read more >
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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