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Department of Chemical Engineering and Biotechnology

 

To date, we have partnered with various rare disease organisation to raise awareness on rare diseases across the world. Some of our partners are highlghted below. 

Chinese Organization for Rare Disorders (CORD)

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.   

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

Einstök börn Iceland

Einstök börn (Unique children) is an advocacy and support group in Iceland for children with rare diseases. The group was established in March 1997 by parents of 13 children who did not feel their needs were met in other support groups. The Icelandic population is small so there are only one or two children suffering from each rare disease. Today the group represents 440 individuals with 230 different diseases.

The group focuses on maintaining a good and prosperous relationship between parents and healthcare professionals to make them aware of the unique needs of these individuals within the healthcare system. They want to make sure people have access to understandable information about their disease, and also raise awareness of rare diseases. They participate in information sharing with similar societies worldwide.

Einstök börn and CamRareEd have started an initiative where they ask children with rare diseases to express their thoughts on how they picture the world changing with regards to health, environment and technology, and how they might benefit from the changes. The responses will be published online as the project progresses.

Rare Disorders Kenya

Rare Disorders Kenya was conceived in 2018 as a patient-led organization that seeks to provide a united voice and improve the lives of the rare disease community in Kenya. 

Some of the unique challenges faced by rare diseases in Kenya include the lack of a national definition of what constitutes a rare disease, none existent data and registry of people living with a rare disease. There is also an inadequacy of specialized healthcare providers. Because of the social-cultural factors unique to the African context, rare diseases are often stigmatized by the society in general.

 

 

The goals of the organisation include: 

  • creating awareness about rare diseases in the general public. 
  • working with the policy makers, public authorities, researchers and health professionals in addressing the needs of the rare community.
  • providing a support network for members in particular those for whom one is not available or known locally.

National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) is a U.S. based patient advocacy group dedicated to individuals with rare diseases and the organizations that serve them.  Established in 1983, NORD was founded by a small group of patient advocates who aimed to mobilize support for people with rare diseases who had daunting medical and financial issues and few resources. Today, NORD continues to raise awareness and recognition of the challenges endured by people living with rare diseases.

 

For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies, providing patient and professional education, mentoring patient organizations, advancing medical research, and offering  patient assistance programs for those who need them most. NORD provides grants for rare disease research and also hosts international patient registries and natural history studies, working with disease-specific patient organizations. NORD maintains a database for patients and caregivers with reports on over 1,200 diseases. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.