Navigation Links
DIA-NORD Conference on Rare Diseases and Orphan Products to Feature Patients Discussing Challenges to Diagnosis and Treatment
Date:9/30/2013

Bethesda, MD (PRWEB) September 30, 2013

WHAT: Thirty years after the adoption of the Orphan Drug Act, patients with rare diseases still face incredible obstacles. At the U.S. Conference on Rare Diseases and Orphan Products, with its theme of “The New Era in Health Care,” patients and patient advocates will discuss:

  • Getting an accurate diagnosis
  • Supporting research for and the development of treatments
  • Assuring patient access to appropriate treatment
  • Strengthening one’s ability to be a self-advocate

WHEN: Oct. 7, 9:45-11:15 a.m.

WHERE: Bethesda North Marriott Hotel & Conference Center, Bethesda, Md.
         White Oak Room, Lower Level

WHO: Panelists include:

Lisa Schill, Noonan Syndrome Foundation, vice president and a founding member
Schill is the mother of Max, age 4, who is diagnosed with Noonan syndrome, a rare genetic disease with an estimated prevalence of 1 in 2,000 births.

Katheryn Elibri Frame, D.O., International Foundation for CDKL5 Research, president
After Frame’s daughter was diagnosed with CDKL5—a rare genetic disease with about 600 known cases in the world—Frame, a physician, and her husband helped start the International Foundation for CDKL5 Research.

Steve Mikita, Utah assistant attorney general; has spinal muscular atrophy
Mikita works on behalf of patients in the United States to raise awareness of the importance of the patient’s voice at every step along the drug development process. Spinal muscular atrophy (SMA) manifests in various degrees of severity, which all have in common general muscle wasting and mobility impairment. SMA is the most common genetic cause of infant death.

ABOUT NORD:
NORD is a nonprofit organization established in 1983 by leaders of rare-disease patient organizations to represent all Americans affected by rare diseases. NORD provides programs of advocacy, education, research and patient/family services. It works closely with its approximately 200 member organizations representing people with specific rare diseases. NORD has offices in Washington, D.C.; Danbury, Conn.; and Boston. Learn more about NORD at http://www.rarediseases.org. Follow NORD on LinkedIn, Twitter, YouTube and Facebook.

ABOUT DIA:
DIA is a neutral, global, professional and member-driven association of nearly 18,000 professionals involved in the discovery, development and life cycle management of pharmaceuticals, biotechnology, medical devices and related health care products. Through our international educational offerings and myriad networking opportunities, DIA provides a global forum for knowledge exchange that fosters the innovation of products, technologies and services to improve health and well-being worldwide. Headquarters are in Horsham, Pa., USA, with offices in Basel, Switzerland; Tokyo, Japan; Mumbai, India; Beijing, China; Washington, D.C.; and Latin America. Visit our website at http://www.diahome.org and follow DIA at: LinkedIn, Twitter, YouTube, Facebook, Flickr and Pinterest.

Read the full story at http://www.prweb.com/releases/2013/9/prweb11180359.htm.


'/>"/>
Source: PRWeb
Copyright©2012 Vocus, Inc.
All rights reserved

Related medicine news :

1. Elsevier organizes label-free technologies conference
2. NJ stroke researchers report advances in spatial neglect research at AAN Conference
3. Blending conference translates substance abuse research into practice
4. International conference to explore health of descendants of transatlantic slave trade
5. Dr. Yael Mosse will receive first Nachman Award in Pediatric Oncology at national conference
6. Nobel laureate to keynote international pharmaceutical conference at URI
7. Pharmica Consulting to Hold HIT Conference for the Pharmaceutical Industry
8. Snoring Isn't Sexy Member Dr. Mark Levy attends Academy of Clinical Sleep Disorders Disciplines Conference in Phoenix, Arizona
9. AuntMinnie Begins Live Video Stream of ISCT Conference Proceedings
10. NOVAtime Solutions to be showcased at Booth #1821 in the upcoming Society for Human Resource Management (SHRM) Annual Conference and Exposition
11. International Nanomedicine Conference bound for Sydney: July 2-4, 2012
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:6/23/2017)... ... June 23, 2017 , ... Radabaugh & Associates, a ... and business owners in North Central West Virginia, is embarking on a cooperative ... abled residents in the region. , The Stepping Stones organization offers a series ...
(Date:6/22/2017)... California (PRWEB) , ... June 22, 2017 , ... Groove ... spread the word about their high performance silicon wedding bands and all-purpose rings. Whether ... are the active, silicone rings designed just for you. , From the rock face ...
(Date:6/22/2017)... ... June 22, 2017 , ... A June 12 article in ... about an apparent lack of oral hygiene by an aged parent who had recently ... matters, suggests a number of steps, including scheduling a dentist visit. Northridge Dental Works, ...
(Date:6/20/2017)... York City (PRWEB) , ... June 20, 2017 , ... After months of negotiations, FaceCradle ... QVC Network on Wednesday, June 21. , “Introducing our product on QVC is ... for us to promote our travel pillow to more than 90 million homes in the ...
(Date:6/20/2017)... ... June 20, 2017 , ... ... the introduction of school choice can promote economic development in economically distressed urban ... has, according to the report, contributed to the economic development of the city ...
Breaking Medicine News(10 mins):
(Date:5/22/2017)... , May 22, 2017  As the ... a whole continue to make the revolutionary shift ... increasingly important for ensuring positive patient outcomes and ... stakeholders are shifting focus away from clinical trials ... effects of long-term specialty drug therapy utilization in ...
(Date:5/18/2017)... WHIPPANY, N.J. , May 17, 2017  Bayer ... growing oncology portfolio will be presented at the 53 ... Clinical Oncology (ASCO), taking place June 2-6 in ... being presented at ASCO span prostate, colorectal, liver and ... subgroup analysis from the Phase II CHRONOS-1 trial of ...
(Date:5/15/2017)... , May 15, 2017 Enterin Inc., a ... and developing novel compounds to treat Parkinson,s disease (PD), ... study is a Phase 1/2a randomized, controlled, multicenter study involving ... It will enroll 50 patients over a 9-to-12-month period. The ... in 10 patients with PD. Participating sites include ...
Breaking Medicine Technology: