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 organizati
'/>"/>

Source: PRWeb
Copyright©2012 Vocus, Inc.
All rights reserved

Page: 1 2

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:7/14/2014)... 14, 2014 Documented Legacy , a ... the publication of its first military memoir about a World ... Thursday in October 1943 and 19 months as a prisoner ... and build the American dream. , From the Top ... dream (Amazon) is a true life story of ...
(Date:7/14/2014)... 14, 2014 Seven promising startup ... healthcare problems have been accepted into the ... Accelerator (DHA). , The awardees were selected ... multi-stage process. They include Biomeme, Fitly, Life Patch, ... (from France) and Pulse InfoFrame (from Canada) —both ...
(Date:7/14/2014)... 2014 According to a new market ... (GaN, SiC, and Others), Devices (Power IC, Power Module ... Forecast to 2014 - 2020", the Power Electronics market ... power electronics market is valued at $36.86 Billion and ... 2014- 2020. The report also includes an in-depth analysis ...
(Date:7/14/2014)... Dallas, TX (PRWEB) July 14, 2014 ... transcatheter heart valves market in Americas. The analysis ... over the 2007–2020 period and key company share ... countries: US, Canada, Brazil and Mexico. It uses ... and secondary research and in-house analysis. , Scope, ...
(Date:7/14/2014)... July 13, 2014 (HealthDay News) -- Along with improving ... with Alzheimer,s disease and other types of dementia, a ... quality of life, the researchers said. "These preliminary ... of benefits for people with dementia and their loved ... of Case Western Reserve University and University Hospitals Case ...
Breaking Medicine News(10 mins):Health News:Mount Laurel-based Documented Legacy to Release Military Memoir of World War II Air Force Vet Who Survived Black Thursday Crash 2Health News:Seven Healthcare Startups Selected to Participate in University City Science Center’s First Digital Health Accelerator 2Health News:Seven Healthcare Startups Selected to Participate in University City Science Center’s First Digital Health Accelerator 3Health News:Seven Healthcare Startups Selected to Participate in University City Science Center’s First Digital Health Accelerator 4Health News:Power Electronics Market Estimated to Reach $36.86 Billion by 2020 at CAGR of 7.74% - New Report by MarketsandMarkets 2Health News:Power Electronics Market Estimated to Reach $36.86 Billion by 2020 at CAGR of 7.74% - New Report by MarketsandMarkets 3Health News:Power Electronics Market Estimated to Reach $36.86 Billion by 2020 at CAGR of 7.74% - New Report by MarketsandMarkets 4Health News:Power Electronics Market Estimated to Reach $36.86 Billion by 2020 at CAGR of 7.74% - New Report by MarketsandMarkets 5Health News:Americas Transcatheter Heart Valves Market 2020 Forecasts in New Research Report at LifeScienceIndustryResearch.com 2Health News:Americas Transcatheter Heart Valves Market 2020 Forecasts in New Research Report at LifeScienceIndustryResearch.com 3Health News:Americas Transcatheter Heart Valves Market 2020 Forecasts in New Research Report at LifeScienceIndustryResearch.com 4Health News:Cataract Surgery a Plus for Someone With Dementia, Study Says 2
... the McEwen Centre for Regenerative Medicine, Toronto General Hospital, researchers ... specific repair cells from the bone marrow to the affected ... been known that bone marrow cells have the ability to ... not been known until now is the critically important role ...
... that analyzed nearly 22,000 U.S men for a good 14 ... and keeping tabs on the body weight has an impact ... , ,Dr. Eric B. Rimm, co-author of the study, said ... be psychological, it has become clear that heart disease and ...
... Squibb has announced the launch of BARACLUDE? (entecavir) ... //following its approval by the Drug Controller General of ... treatment of chronic hepatitis B virus infection in adults ... of persistent elevations in serum aminotransferases (ALT or AST) ...
... into a leading diabetes management training center, not ... Afro-Asian countries//. The MV Hospital for Diabetes and ... Organization’s collaborating centre for diabetes research and training ... diverse countries as Cameroon, Tanzania, Myanmar, North Korea, ...
... rich in carbohydrates was very effective in maintaining weight loss ... be presented at the Australian //Institute of Food Science and ... conducted by the University of Melbourne research dietician Liz Delbridge ... for a period of 12 weeks. ,She and ...
... women with type 1 or 2 diabetes over a period ... of hip fracture among them//. This has helped to highlight ... population. ,According to Dr. Mohsen Janghorbani from Isfahan ... has not traditionally been considered a consequence of diabetes mellitus. ...
Cached Medicine News:Health News:Bone Marrow Cells Aid In Heart Repair 2Health News:Bone Marrow Cells Aid In Heart Repair 3Health News:India Approves Baraclude? (entecavir) For ,Treatment Of Chronic HEPATITIS B 2Health News:Diabetic Women Show Increased Risks of Hip Fracture 2
(Date:7/14/2014)... 2014  Remedy Informatics, the leading provider of ... life sciences research, announced that it has teamed ... build the first-ever national patient registry devoted to ... "The National Pancreas Foundation is a ... and committed organizations can effect upon society as ...
(Date:7/14/2014)... , July 14, 2014  Celsion Corporation (NASDAQ: ... that the Company will ring the NASDAQ Stock Market closing ... New York, NY . President ... the Celsion and EGEN management teams will participate in the ... ET.  A live webcast will be available at https://new.livestream.com/nasdaq/live ...
(Date:7/14/2014)... Minn. , July 14, 2014  Today, ATS ... announced that it acquired the assets of MicroTest Labs, ... The acquisition of MTL is the first step in ... chemistry laboratory services platform to support the medical device ... known as Accuratus Lab Services , a name ...
Breaking Medicine Technology:Remedy Informatics Partners with National Pancreas Foundation to Build a National Patient Registry 2Remedy Informatics Partners with National Pancreas Foundation to Build a National Patient Registry 3Celsion Corporation to Ring the NASDAQ Stock Market Closing Bell on July 16, 2014 2Celsion Corporation to Ring the NASDAQ Stock Market Closing Bell on July 16, 2014 3ATS Labs, Inc. Announces the Acquisition of MicroTest Labs, Inc. 2ATS Labs, Inc. Announces the Acquisition of MicroTest Labs, Inc. 3
... /PRNewswire-iReach/ -- Today Enroute Systems Corporation ... last mile postal service delivery service options for its ... existing support of multiple global and regional carrier parcel ... businesses and residences in over 220 countries through their ...
... 31, 2012 Medical Alarm Concepts Holding, Inc. (OTCQB: ... subsequent order as part of a large ongoing commitment ... purchase order, which will be delivered in monthly installments ... date. "In November 2011, we announced a ...
Cached Medicine Technology:Enroute Adds Last Mile Postal Service Delivery Services 2Enroute Adds Last Mile Postal Service Delivery Services 3Medical Alarm to Begin Fulfillment of MediPendant™ Against Largest Purchase Order - Announces Additional Warrant Cancellations 2Medical Alarm to Begin Fulfillment of MediPendant™ Against Largest Purchase Order - Announces Additional Warrant Cancellations 3Medical Alarm to Begin Fulfillment of MediPendant™ Against Largest Purchase Order - Announces Additional Warrant Cancellations 4