Raremark

We are rare disease nurses, genetic counsellors, parents to children with rare disease, people that have rare diseases ourselves or people who are passionate about making a positive difference.‍Our aim is to become the “Macmillan of Rare Disease”; we are determined to create better services for those affected by rare diseases and improved information for nurses, and other healthcare professionals, to help them provide stronger support for their patients. We are in need of your support so that we can continue to support patients and their families with rare disease. To provide a network of specialist nurse support for every person with a rare disease. To deliver innovative support to nurses (and other healthcare professionals) involved in rare disease, so that they are more empowered to provide better help for rare disease patients and families on their rare disease pathway.

Share4Rare is a European project which aims to improve the quality of life of those affected by a rare disease. The Share4Rare platform is a safe space where patients and carers can connect, share knowledge and get involved in scientific research. The Share4Rare platform allows patients to get involved from anywhere in the world, connect with people like them and push together to advance research. Our mission is to systematically address problems faced by the European Melanoma community (Adult and Paediatric, Rare and less rare) in a constructive, result-oriented and collaborative manner by providing a platform for advocates to interact and through targeted capacity-building. We are a multidisciplinary team focused on offering a solid, innovative and agile approach to web development, communities design, process management and online marketing. Share4Rare is going to be piloted with three groups of conditions: rare tumours, neuromuscular disorders and undiagnosed. Share4Rare offers advice and information on specific rare conditions. Share4Rare will help us meet other families with similar conditions to that of our daughter and keep up to date with the latest treatments.

We made it our mission to bring orphan drugs to the U.S and ensure that Americans living with rare diseases have access to the most effective treatments available anywhere. We believe that patients suffering from rare diseases are no less deserving of effective treatment options than those suffering from more common conditions. A medication or other medicinal product used to treat a rare disease or disorder. Medical practices, products and/or regulations can be different from one country to another and as a result, the medical and/or product information on this site may not be appropriate for use outside of the United States.

We are passionate about improving the lives of people affected by these conditions. We are confident that through innovative ideas, robust science and a passionate and highly focused team, we can elevate the needs of patients living with a rare disease and help to reduce the differences in the quality of their care that exist across the globe. We are passionate about improving the lives of patients with rare and ultra-rare diseases. HRA Pharma Rare Diseases is dedicated to bringing the best care and services to people living with rare diseases and is committed to supporting healthcare professionals all over the world. By partnering with the community, we are committed to tackling current challenges, reducing the time to accurate diagnosis, enabling global access to treatment and offering effective options for the long-term management of rare diseases.

We are a group of like-minded, passionate individuals who go to extraordinary lengths for our partners, customers, investors and the people across the globe who we serve. We develop and commercialise medicines to serve people living with common diseases, as well as those living with some of the rarest, in around 150 countries. At Recordati Rare Diseases, we focus on the few - those affected by rare diseases. We believe that every single patient has the right to the best possible treatment.

RareCareUK will provide care for now, hope for future and the ability to play a role in achieving this” – Dr Shara Cohen, Founder of RareCareUK. Due to the rarity of each disease, there is a lack of scientific knowledge and reliable information which leaves families affected by these diseases unsure of what to do to get help. Yesterday Euroscicon Ltd facilitated a partnership between RareCareUK and Cancer Care Parcel. Rare Care UK is a newly formed initiative to supply care for Rare Diseases when it can’t be found through standard channels.