alexa Management Of Rare Diseases: An Integrated Approach To Break Down Barriers And Facilitate Patient Access To Healthcare
ISSN: 2157-7412

Journal of Genetic Syndromes & Gene Therapy
Open Access

Like us on:
OMICS International organises 3000+ Global Conferenceseries Events every year across USA, Europe & Asia with support from 1000 more scientific Societies and Publishes 700+ Open Access Journals which contains over 50000 eminent personalities, reputed scientists as editorial board members.

Open Access Journals gaining more Readers and Citations

700 Journals and 15,000,000 Readers Each Journal is getting 25,000+ Readers

This Readership is 10 times more when compared to other Subscription Journals (Source: Google Analytics)

Share This Page

Additional Info

Loading
Loading Please wait..
 

2nd World Congress on Rare Diseases and Orphan Drugs
June 29-30, 2017 London, UK

Gayathri Balasubramanian
Focus Scientific Research Center - Phamax, India
ScientificTracks Abstracts: J Genet Syndr Gene Ther
DOI: 10.4172/2157-7412-C1-012
Abstract
Background: In Europe, a rare disease is a disease that affects less than 1 in 2000. Although this seems to affect a fraction of the population, collectively it imposes a colossal. Rare diseases are disabling, dramatically reducing the quality of life, hampering routine activities and autonomous survival. Rare diseases management is intricate and varies across geographies. Understanding the complexities is important to resolve issues and improve care. Methodology: Secondary research of published and grey literature is reviewed. Findings: Some of the challenges encountered in rare diseases management are delayed or misdiagnosed, lack of awareness on diseases/management, lack of quality healthcare at proximity, struggles to continued care, treatment access, and social consequences. In recent times, stakeholders such us healthcare providers, patient organizations, pharmaceutical companies, regulatory bodies and policy makers have taken many initiatives to resolve these challenges. National polices/plans are devised exclusively to manage rare diseases. Compassionate use programmes have encouraged research and provided accelerated entry of orphan drugs into the market. Organizations like EURORDIS have given voice to more than 300 rare disease organizations in over 30 countries. While these stakeholders individually have endeavored to improve healthcare and social care, the complex challenges demand novel and integrative approach to effectively manage the rare diseases scenario (Figure). Additionally, leveraging on technology to create unified platforms and eHealth/mHealth programs can aid quick and better reach. Recommendation: Literature review has established some challenges and approaches to overcome them. However, in order to develop and implement an integrative approach in practice, the current drivers and barriers to effective management must be clearly explored. This demands a sequential explanatory research (quantitative study followed by qualitative) to explain quantitative results on current practices by exploring certain outcomes (especially unexpected ones) in depth. Eventually, an integrated approach can be developed to successfully address concerns and strengthen the management.
Biography

Gayathri Balasubramanian is a Scientific Advisor at FSRC, part of phamax AG. She holds a Master’s in Clinical Research from the University of Sheffield, UK. She was awarded the “Graduate Award” and “Skills for Work” by the University of Sheffield and other top global organizations for academic, volunteering and extracurricular activities during her tenure there. She has 4 years of progressive experience in the healthcare research domain and she is proficient in primary and secondary research (various assignments employing mixed methods research), systematic reviews and critical appraisal, stakeholders identification, liaison and engagement and publications. She has worked on diverse projects in market assessment, market access, policy shaping, forecasting and epidemiology in therapeutic areas of rare diseases, oncology, diabetes, cardiovascular diseases and infectious diseases.

Email: [email protected]

image PDF   |   image HTML
 

Relevant Topics

Peer Reviewed Journals
 
Make the best use of Scientific Research and information from our 700 + peer reviewed, Open Access Journals
International Conferences 2017-18
 
Meet Inspiring Speakers and Experts at our 3000+ Global Annual Meetings

Contact Us

 
© 2008-2017 OMICS International - Open Access Publisher. Best viewed in Mozilla Firefox | Google Chrome | Above IE 7.0 version
adwords