#BoneMatters online information events (opens in new tab) are monthly online sessions from the Royal Osteoporosis Society that can be shared with patients to help answer frequently asked questions. From living with fractures and understanding treatment, to nutrition and exercise, the Royal Osteoporosis Society talk to experts about the topics that matter the most.
Cambridge Rare Disease Network (open in new tab) put those living with rare conditions at the heart of everything that they do; supporting families, raising awareness, networking with impact and enabling solutions. They strive for a world where people with rare diseases are valued and supported.
CamRARE believe that collectively those affected by different rare conditions and the professionals who work with them can significantly influence service delivery at every level, ensuring their collective needs are met. CamRARE brings together stakeholders from families, research, industry, business, healthcare and patient advocacy groups making a real and positive difference in the lives of people with rare diseases.
Cambridge Rare Disease Network events programme (opens in new tab) provides a platform for change - creating forums for discussion, sharing knowledge, insights, opinion and experience. CamRARE events unite patients, advocates, and experts to address the challenges faced by people affected by rare diseases, encouraging community collaboration.
On a free, five-week course from the European Joint Programme on Rare Diseases - From Lab to Clinic: Translational Research for Rare Diseases (opens in new tab), you'll gain an overview of the issues, challenges, and opportunities in translating research into treatments for rare disease patients.
Also available, is the course Diagnosing Rare Diseases: From the Clinic to Research and back (opens in new tab), where you will discover the role of research, clinical investigation and data sharing in diagnosing rare diseases.
In partnership with Health Education and Improvement Wales (HEIW), Genomics Partnership Wales (opens in new tab) have developed a suite of flexible eLearning modules to increase genomics literacy and understanding of genomic medicine for the healthcare workforce in Wales.
The Global Nursing Network for Rare Diseases (GNNRD) (opens in new tab) provides an opportunity for nurses and nursing students to exchange knowledge and skills, share experiences and raise awareness on a global scale. The Network aims to connect and share expertise between nurses regardless of setting, specialty, level or role, as every nurse will encounter people affected by rare or undiagnosed diseases. The GNNRD will work together to create a community of practice to provide nurses with key resources to promote and implement comprehensive care, and provide and influence education to upskill nurses.
A fortnightly podcast from the Journal of Inherited Metabolic Disease (opens in new tab), where authors discuss recent publications from the journal. The podcast is intended for specialists and interested clinicians but is also intended to increase the accessibility of this work for patients and families. Supported by Wiley.
With over 7,000 rare diseases, it’s impossible to know about all of them. However, M4RD (opens in new tab) believe that it is possible for doctors to:
Understanding how our genome – our complete genetic code – influences our health can mean better diagnoses, leading to new and targeted treatments, and even predicting and preventing disease. Health Education England Genomics Education Programme (opens in new tab) exists to deliver and advise on learning and development opportunities that prepare current and future NHS professionals to make the best use of genomics in their practice.
Visit Health Education England Genomics in Primary Care (opens in new tab) and learn about the increasing importance of genomics in primary care and the role practitioners play in the delivery of personalised medicine.
Visit the Genomics Education Programme's Rare Disease Education Hub (opens in new tab) and learn about why rare disease is a healthcare priority in the UK - and where genomics can help.
The Genomics Education Programme's Genomics notes for clinicians (opens in new tab) offers quick, concise information to help healthcare professionals make the right genomic decisions at each stage of a clinical pathway.
The NHS Leaning Hub (opens in new tab) is an online platform for learning and sharing resources. The Learning Hub provides easy access to a wide range of educational resources, eLearning, specialist health and care content and more, which have been developed or shared by professional organisations such as the Royal Colleges, universities and other health and care organisations. The Learning Hub supports organisations and individuals across the NHS health and social care workforce, including local government and universities. Anyone with a NHS email address (including Wales, Scotland and Northern Ireland) or Registered NHS England and NHS Scotland OpenAthens users can access the Learning Hub.
Nutricia Academy (opens in new tab) offers a free, digital learning platform for healthcare professionals. This educational website has been initiated and developed by Nutricia Limited and includes content that may mention Nutricia products.
The Royal College of General Practitioners (RCGP) evidence based CPD bring together in one place the very latest expert knowledge and guidance for primary care. Designed to support GPs with their CPD and revalidation, the Essential Knowledge Update (EKU) Programme (opens in new tab) enable GPs to apply and assimilate this new information within their day-to-day practice, assess their existing knowledge and highlight their learning and service needs. Metabolic clinical eLearning resources include Alkaptonuria and Glycogen Storage Disease.
The Royal College of General Practitioners (RCGP) Genomics Toolkit (opens in new tab) has been developed in partnership with NHS England Genomics Education Programme (opens in new tab) to support increasing understanding, raise awareness of Genomics Medicine and support primary care with increased knowledge of how genomics can contribute to improving patient care in a 'genomics era'. It is a collection of resources that explain how Genomics Medicine can be incorporated in Primary Care, including training resources and audit suggestions, and providing links to relevant guidance and patient resources. This toolkit is designed to be used by the entire clinical primary care team. It can be used as quick reference resources or as a package for CPD, to deliver awareness-raising and educational events, and in supporting trainees preparing for the MRCGP.
The Rare Diseases University (RDU) (opens in new tab) is a Sanofi-sponsored online, interactive educational platform designed for healthcare professionals around the world who have an interest in rare diseases and are committed to advancing their knowledge and expertise. It is available to healthcare professionals who have enrolled for the Rare Diseases University and is intended to raise awareness about and help educate enrolled healthcare professionals on certain rare diseases.
The Takeda Rare Disease Hub (opens in new tab) is intended for healthcare professionals who are currently residing and practising in the United Kingdom. This free, educational website has been initiated and developed by Takeda and includes content that may mention Takeda products.
Vitaflo In Association (VIA) (opens in new tab) houses disorder‐specific resources, including case studies, product practical guides and virtual events and webinars, created in collaboration with Healthcare Professionals from around the world. This free, online portal has been initiated and developed by Vitaflo International Ltd and aims to educate, inform and inspire healthcare professionals in specialist areas of clinical nutrition.
Through events and support networks, Wales Gene Park (opens in new tab) link those living with genetic conditions to advances in genetics and genomics research. Their specialist networks, conferences and CPD events for health professionals enhance genomics knowledge and improve the patient experience.