About Us
Our Beliefs
We believe that families and patients who are affected by a rare disease shouldn’t have to leave their country to get the best healthcare. By training Healthcare Professionals and Patient Advocacy Groups in Rare Diseases, we’re able to keep families together and help Healthcare Professionals help their patients. Our mission is to invest in education in order to empower the Healthcare Professionals , patients and Patients advocacy groups . We do that, by creating educational programs and providing necessary resources in Low-Middle Income Countries . Making the “on the ground” Healthcare Professionals experts.
The ARC Difference
01
Evaluate
“To learn, you need to know what you don’t know “
We assess the educational needs of our delegates, whether it’s delegates from low to middle income countries or delegates from high income countries. We must learn what is truly required before we can begin to educate.
02
Spread the Word
“Those who make the biggest difference are not always those with titles.”
By working with local clinicians and institutions, we learn who are the Key Opinion Leaders, Allied Health Care Professionals and those who have a passion for helping their patients.
03
Educate
“Hope comes in many forms, and education is one”
Health Care Providers attend a training event, whether digital or face-face, and receive tailor-made training delivered by an outstanding faculty and speakers. We plan, learn, apply and assess continuously.
04
Create a community
“We are stronger together, and it is the patients who benefit when knowledge, experience and services are shared.”
We don’t learn in a day or a few days, so we always endeavour to offer education that continues long after we’ve held our educational sessions.
Raise Your Helping Hand
we are a non-profit organization, who are looking to ADVANCE the HEALTH OR THE SAVING OF LIVES IN RELATION TO THE GLOBAL RARE DISEASE COMMUNITY BY PROVIDING INFORMATION AND RESOURCES TO RAISE KNOWLEDGE AND INCREASE AWARENESS.
Projects
- We have trained over 250 healthcare professionals in more than 50 countries and assisted in diagnosing over 1,000 rare disease patients, many of whom had never received such a diagnosis before. Next we need to train allied health care professionals and patient groups to support these activities to start building sustainable programs.
- We have established networks connecting trained professionals, both clinical and laboratory, with patient organisations. Our most advanced network, the Africa Roadmap, uses a hub-and-spoke model to connect a laboratory in South Africa with eight centres of excellence. This network provides education, diagnostics, clinical support, and advocacy with multiple partners. If you are practising or providing services in Africa you can join the project here which is a joint project with the International Gaucher Alliance. https://docs.google.com/forms/d/e/1FAIpQLSeEv8D0WJ4wMUbEmiHUCPKBYOYY_ZuYOvul-2FHspzBUjxDsA/viewform?pli=1
- We support the Nngwe project which aims to reduce the diagnostic times for rare disease patients. http://www.nngwe.org.za
- We are building a patient-held registry in Sri Lanka, which will serve as a pilot for developing federated AI networks to enable data sharing compliant with all regulations. This model aims to benefit patients and patient organizations from data sharing and explore the potential of real-world data (RWD) and real-world evidence (RWE) supported by wearable technology.
- We are working on the use of AI in radiology, which can be applied in LMICs.
Interested in helping?
Become a Volunteer
You can get involved today by becoming a Volunteer. Sign up and you will be joining a group of change-makers, a network strong enough to impact positive change in the lives of children.
Give Scholarship
Your gift will help equip children in need with necessary resources, training and education while offering the promise of a brighter future. You can make a difference today by signing up.
Testimonials
What People Say
The training event has inspired me to start a Rare Disease Diagnostic centre within my home country
Event Delegate
Learning that there are opportunities to help patients who cannot afford, to get a diagnosis and possible treatment
Event Delegate
Our Ideals and principles:
A Rare Cause – Ideals and Principles
Mission: To advance health and save lives within the global rare disease community by providing vital information and resources, thereby raising awareness and understanding of the unique challenges these communities face.
Ideals:
1. Compassion: We are steadfast in our compassion for those affected by rare diseases, guiding our actions and initiatives.
2. Service: Our service extends beyond aid; we provide knowledge, connections, and financial support to empower rare disease communities.
3. Innovation: We are committed to innovation, constantly seeking new solutions to advance the cause of rare disease families.
4. Collaboration: We believe in the power of collaboration, working alongside others to amplify our impact and achieve shared objectives.
5. Empowerment: We empower individuals and communities with the skills and resources necessary for self-improvement.
6. Advocacy: We advocate for the rights and needs of rare disease families, promoting ethical considerations and societal acceptance.
7. Ethical Impact Strategy: We pledge to cultivate the trust of our supporters and the broader community by maintaining transparency in our financial dealings. We are committed to ensuring the enduring success of our mission through thoughtful strategic planning and steadfast dedication to environmental stewardship, guaranteeing sustainability for future generations.
Principles:
1. Integrity: We uphold the highest standards of honesty and ethical conduct, building trust in every interaction.
2. Openness: We welcome scrutiny and engage in open dialogue to address any concerns.
3. Right to be Safe: We foster a culture of safety, ensuring protection from harm for all associated with our organization.
4. Respect for Dignity and Rights: We respect everyone’s dignity and privacy, implementing measures to protect the identities of rare disease patients.
5. Commitment to Diversity: We embrace diversity, promoting respect and cultural awareness universally.
6. Accountability: We ensure that every member of ARC upholds these principles.
OUR TRUSTEES
Dumebi Oderinde- Chair
Dr Dumebi Oderinde completed her doctorate research reviewing the practices of Enterprise Architecture being adopted by public sector organisations in 2012. She has worked in several roles both in public and private sector organisations including international deployments. Her current role as an Enterprise Architect in the defence sector enables her to interact with both local and global clients, supporting the development of the architecture capability within her organisation. Dumebi leads a non-profit organisation as an advocate for education and awareness of women’s health issues such as endometriosis and fibroids. Her weekends are focussed on spending time with her family and building Lego with her six-year old son.
Tiffany Wong- Secretary
Through her role as Executive Director, Global Commercial Lead at Ultragenyx Pharmaceutical, Tiffany combines her work with her passion for raising awareness of rare disease around the globe. As part of her most recent roles in global and region marketing at both Ultragenyx and BioMarin, she has found meaningful connection and partnership with healthcare providers, patients, and caregivers in the X-linked hypophosphatemia, osteogenesis imperfecta, and mucopolysaccharidosis communities. In these roles, she has overseen programs to not only raise awareness, but also to support global knowledge sharing of scientific research and best practices for management of these rare diseases.
Tiffany brings broad marketing experience from her roles in the pharmaceutical and medical technology industries, and management consulting experience from her time at Boston Consulting Group where she advised organizations across many industries on business strategy, operations, and transformation efforts.
Tiffany holds a Masters of Business Administration from Harvard University and a Bachelors in Chemical Engineering from Cornell University.
Amaka C Offiah
The second black female professor in medicine in the UK. General interest in imaging of the paediatric musculoskeletal system and a particular interest in the imaging of child abuse and skeletal dysplasias. Expert witness for Her Majesty’s Courts in close to 500 cases of suspected child abuse. One of only a few academic paediatric radiologists in the UK. The first female and first paediatric radiologist to be awarded the Royal College of Radiology Roentgen Professorship.
1. Close to 300 publications, including over 150 original and invited articles in peer-reviewed journals and 4 international/national guidelines.
2. Over 200 invited lectures at national and international conferences including 25 as RCR 2013 Roentgen Professor.
3. Co-author of 3 books:
a. Paddock M, Offiah AC Paediatric Radiology Rapid Reporting for FRCR Part 2B Springer 2019
ISBN 978-3-030-01964-8.
b. Hall CM, Offiah AC, Forzano F, Lituania M, Fink M, Krakow D Fetal and Perinatal Skeletal Dysplasias: An atlas of multimodality imaging. Radcliffe Publishing Ltd ISBN 978-184619-488-7
(HIGHLY COMMENDED, BMJ 2013 BOOK AWARDS).
c. Offiah AC, Hall CM Radiological Atlas of Child Abuse Radcliffe Publishing Ltd ISBN 978-184619-043-8.
(RADCLIFFE WRITING AWARDS 2005).
4. Author/co-author of 15 book chapters.
5. Chair, University of Sheffield BAME Staff Network and Departmental Director for Equality, Diversity & Inclusion (Department of Oncology & Metabolism, University of Sheffield).
The Team
Florence Hendriksz- Head of Operations (Pro bono)
Florence Hendriksz qualified as a diagnostic radiographer at the University of Pretoria and practised for 10 years in South Africa. A family move enforced by having a child with a rare disease moved her to the United Kingdom where she furthered her studies in Nonprofit management. She fulfilled a variety of roles in an International Charity called Caring For Life from Executive Assistant to Executive Director and finally as HR Director when she left in 2014. She brings her vast experience in management, human relations policy and finance to A Rare Cause.
Chris Hendriksz – Chief Community Impact Officer ( Pro bono)
Chris Hendriksz qualified as a medical doctor in South Africa in 1985 from the University of Pretoria. He completed his Master’s degree in Sports Medicine at the same university. Following a rare disease diagnosis of his own child, he moved to the United Kingdom, where he continued his studies, becoming an expert in inborn errors of metabolism across all ages. He obtained his MRCP and FRCPCH with subspecialty registration after training at the world renowned Willink Unit in Manchester, UK.
He spent 22 years in the UK National Health Service in various roles leading both pediatric Birmingham Children’s Hospital and adult Salford Royal NHS foundation trusts rare disease centres with patient populations in excess of 1500 at each unit. Currently, he is an Extraordinary Professor of Human Metabolomics at North-West University, Potchefstroom, South Africa, and an Extraordinary Professor of Paediatrics and Child Health at the Steve Biko Academic Unit, University of Pretoria. He was employed by Nestlé Health Science as the Global Clinical Development Lead for Rare Diseases, IEM, and Innovative Pharmaceuticals until his retirement at the end of March 2024. Post-retirement, he will continue his lifelong passion for medical education and supporting rare disease service developments in low- and middle-income countries.
He is currently the Chief Community Impact officer for A Rare Cause, a non-profit organization based in England that educates clinicians on rare disease management in more than 50 countries, with the list growing yearly. This creates “hope for those with the least chance of being recognized,” in his own words. He also provides expert knowledge as a consultant for FYMCA Medical Ltd, a family-owned company, to patient organizations, foundations, regulators, and payors in his field of expertise.
His publication list includes more than 250 works, with the majority focusing on rare disease. He has numerous publications related to clinical trials, quality of life, clinical guidelines, and review papers, as well as several book chapters in the field of inborn errors of metabolism.
For further information:
A Rare Cause is a registered Charity No. 1198461
Registered office at 6 The Green, Ilkley, LS29 7FF.