Building on the success of EiP’s Rare Diseases and Chronic Conditions Initiative, as well as the on-going work of the Cystinosis Foundation’s International Cystinosis Congress and Beyond Borders Programme, both organisations have launched a new joint Cystinosis Awareness Campaign aimed at both healthcare professionals through EIP and families of children with Cystinosis through the Foundation. The partnership to educate pediatricians will contribute to a further increase in the diagnosis of cystinosis at an even earlier age with initiation of treatment at an earlier age for affected individuals, thus improving long-term outcomes. A truly collaborative approach the Cystinosis Awareness Campaign aims to:
- Help pediatricians spot the signs of Cystinosis as early as possible and refer, resulting in initiation of treatment even earlier than current standards.
- Support parents and families with free-advice videos (Parents’ Talks) and other support resources.
E-learnings for pediatricians on spotting the signs and parents’ advice videos, along with other free-to-use support resources will form a big part of the campaign. The free-to-view videos and all supporting materials are in the production and filming phase and will be hosted online on a purpose built website/portal throughout 2016
A truly collaborative approach the Cystinosis Awareness Campaign aims to help pediatricians spot the signs of Cystinosis as early as possible and refer, resulting in initiation of treatment even earlier than current standards
The inaugural meeting of the HPV Asia Health Policy Focus Group took place on Friday 25 September 2015 at the Hotel Equatorial in Ho Chi Minh City, Vietnam. The meeting is an integral part of EiP’s wider global HPV Vaccination Campaign that was launched in 2012 to increase vaccination rates globally. By holding EiP’s first regional HPV Asia Focus Group in Vietnam EiP was able to identify and the current barriers to uptake in a targeted effort that goes hand-in-hand with the work of the Global Initiative.
The Focus Group was chaired by Professor Ian Frazer from School of Medicine at the University of Queensland and was a joint collaboration with the AOGIN (http://www.aogin.com) with the focus on bringing together the key HPV stakeholders in SE Asia to formulate plans to improve current HPV vaccination coverage by overcoming the national barriers to uptake.
Countries represented in 2015 included: Indonesia, Singapore, Malaysia, Vietnam, Thailand, and the Philippines and plans are already underway for the 2nd HPV Asia Summit that will take place in partnership with AOGIN in Singapore in 2016.
The inaugural meeting of the HPV Asia Health Policy Focus Group took place on Friday 25 September 2015 at the Hotel Equatorial in Ho Chi Minh City, Vietnam. The Focus Group was chaired by Professor Ian Frazer from School of Medicine at the University of Queensland and was a joint collaboration with the AOGIN (http://www.aogin.com)
Lecture Learning Objectives:
- Understanding the signs and symptoms of lysosomal storage diseases.
- Identifying the key diagnostic features of lysosomal storage diseases and differentiate them from more common diseases.
- Understanding the ‘next steps’ to take after a diagnosis and how to maximize treatment for the patient.
Dr Amel Karaa - During her career, Dr. Karaa has always been intrigued by rare multi-systemic disorders and has tried to acquire a multidisciplinary training in basic research, clinical research, and medical service that uniquely shaped her to be a competent physician scientist. She is double board certified in internal medicine and clinical genetics, and leads the lysosomal storage disorder and adult mitochondrial clinics at the Massachusetts General Hospital in Boston.
The Excellence in Pediatric (EiP) Institute: a nonprofit association with a global reach, that represents and unites 45,000 pediatric healthcare professionals around the world - www.ineip.org. EiP’s approach is to focus on a number of initiatives and campaigns that bring together the top national and international experts in a particular area of pediatrics to produce educational materials (free-to-view e-learnings, conference sessions and support portals) for pediatricians and parents. The US Rare Disease Initiative is the latest part of the campaign with the concept being that by working with the leading US experts in Lysosomal Storage Diseases – EiP can provide the latest impartial and practical advice to pediatricians across the US to help to better detect and refer patients they suspect of having a rare disease.
The EIP Rare Disease Lecture Series: The project takes the form of a lecture series across 5 US cities during the Fall and Winter of 2015-16, with a practical lecture delivered by KOLs in front of an audience of their colleagues, peers, and patient group representatives. The lectures will be filmed and made into free-to-view e-leanings that can be viewed by frontline pediatricians online to increase the early detection rates of rare diseases across the US.
Mass Bio (the Massachusetts Biotechnology Council): a nonprofit organization "committed to advancing the development of critical new science, technology and medicines that benefit people worldwide." http://www.massbio.org/
When Common Complaints are the Signs of Lysosomal Storage Diseases – Identifying LSDs
When Common Complaints are the Signs of Lysosomal Storage Diseases – Identifying LSDs - October 19th, 2015, Boston MA - Dr. Amel Karaa, Clinical Director, Lysosomal Storage Diseases Program Massachusetts General Hospital & Instructor of Medicine Harvard Medical School