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Department of Chemical Engineering and Biotechnology

 

A disease or disorder, is defined in the EU as rare when it affects fewer than 1:2000 of the population. Although any individual condition affects a small proportion of the population, 1 in 20 people will live or be linked to someone with a rare disease due to over 7000 different conditions that have already been diagnosed. Despite major developments in medical treatments and screening technologies rare diseases are still not being consistently diagnosed, treated and supported effectively.

These pages aim to provide links to educational support, stories around the world about children with rare diseases and highlight events that are running on rare diseases.

On 29th February, communities around the world come together to celebrate Rare Diseases Day. 

 

CORD,China

Founded in 2013 by Kevin (Rufang) Huang, who is a rare disease patient, Chinese Organization for Rare Disorders (CORD) is a non-profit organization dedicated to rare diseases in China. CORD serves as a hub for the rare disease communities in China, connecting stake holders and promoting collaborations within China and worldwide. It has worked continuously in raising public awareness on rare diseases, promoting rare disease policy making and improving orphan drug accessibility and affordability for patients in China.

CORD is fulfilling his vision ‘To empower rare disease patients in China to live with hope, equality and dignity.' in many different ways.   

http://www.hanjianbing.org/

 

ACE-FUELS, Nigeria

ACE-FUELS is an acronym for the African Center of Excellence in Future Energies and Electrochemical Systems, domiciled at the Federal University of Technology Owerri, Nigeria.This partnership is intended to provide a ready framework to promote adoption of Electrochemical Science and Technology in Sub Saharan Africa, through an initiative tagged ‘’Electrochemical Technologies for Africa’s Sustainable Economic Development’’ (ETASED). The ETASED programme shall comprise a series of workshops and hands-on training sessions on electrochemical techniques and applications, targeting researchers, industry personnel, rare disease related patients and stake holders within the sub region.

https://acefuels-futo.org/2019/10/14/international-tripartite-partnership-to-promote-electrochemical-science-and-technology-in-sub-saharan-africa/

 

Project Dignity, Singapore

Project Dignity was established in Singapore in 2010 with a singular mission: to restore dignity to the disabled and disadvantaged. Through local heritage cuisine and the hawker food court, the social enterprise has made great strides in solving unemployment among marginalised groups and was recently awarded the 2018 Global Health & Pharma Social Care Awards[1]. To date, the company has trained and placed close to 800 adults with special needs, generated more than $7 million in impact and engaged more than 2000 organisations from Fortune 500 MNCs and government scholars to SMEs and NGOs.[2]

This inaugural partnership with Cambridge Cares is an important step for Project Dignity towards sustainability outreach. Food waste accounts for about 10 per cent of the total waste generated in Singapore, but only 17 per cent of the food waste is recycled. Tapping the academic expertise of Dr Albert Fisher and his team, the company hopes to use relatable science education to raise awareness on food waste management[3] - starting with their network of Singapore schools under Dignity Outreach[4].

[2] For more on their history and vision, visit https://projectdignity.sg/about-us

[4] Dignity Outreach is one of Project Dignity’s social business units providing team bonding services and CSR consultancy. Combining hands-on cooking with community-driven interaction, its flagship programmes act as a platform for businesses to conduct meaningful team building and achieve corporate citizenship objectives. (Refer to the PDF)

Lupus Alert, Mauritius                                                                                                              

Lupus was an unknown disease in Mauritius before the first press article on Dalilah Kalla, who publicly shared her suffering, traumatic experiences and agony at the very young age of 13 in July 1997.  Lupus Alert was founded in Mauritius on 17 January 2000 to provide support for Lupus patients, increase public awareness, improve communication between the patients and the healthcare providers and to raise funds.  Lupus Alert, also, work with other Lupus groups around the world to create worldwide recognition of the disease.

Lupus Alert has exponentially grown over the last 18 years, supporting more and more patients.  It has gained international recognition with the visits of several Professors from around the world, namely Professor D. Isenberg, a Consultant Rheumatologist from University College London, Professor Timothy Vyse from Imperial College London and Professor Slyviane Muller, Research Director of CNRS Laboratory of Therapeutic Immunology and Chemistry at the Institute of Molecular and Cellular Biology, Strasbourg.