The RareBase Networking Portal links people and companies throughout the world with an interest in rare and paediatric diseases.
Rare Disease Ghana Initiative is an initiative with the mission of improving the well-being and quality of life of families affected by rare diseases in Ghana through Awareness, Advocacy, Research, Care and Partnership. Rare Disease Ghana Initiative has a mission to be the leading organisation and the voice for rare diseases in Ghana.
Revolutionizing rare disease care by creating communities of patients, caregivers, health care providers, researchers & supporters, that work together to transform the lives of those living with rare disease.The Rare Disease Foundation is focused on linking basic science and clinical practice to increase the efficiency of rare disease research. This model is called Translational Care. This model drives patient based, treatment focussed research projects from disease characterization to treatment with greater efficiency. By incorporating research, astute clinician observation and patient and family knowledge into the various stages of rare disease research we impact the speed of discovery and the way rare conditions are managed.
ORDI is Founded in Feb 2014(Organization For Rare Diseases India). ORDI is a patient-centered non-profit organization with the mission to improve health of patients with rare diseases around India through awareness, advocacy, collaborations and information dissemination. ORDI represents the collective voice of all patients with rare diseases in India to effect government policy making. ORDI has identified and taken on the grand challenges facing the rare diseases community in India and is committed to systematically and holistically addressing those challenges. Our approach is to engage with key opinion leaders and rare disease experts nationally and internationally to design and implement innovative programs.
The National Alliance for Rare Diseases Support - Malta is a voluntary non-profit organisation which brings together all stakeholders including patients and their relatives, researchers, medical professionals and other organisations representing specific conditions. The Alliance was set up to represent a higher number of patients speaking with one voice, thus providing a stronger voice than a single disease support group. RDM seeks to advocate and provide a network for all rare disease patients and their families, to help them improve their quality of life. The National Alliance for Rare Diseases Support - Malta, strives to strengthen already existing community services and rare diseases groups, by taking a central role in helping these entities take their cause to a higher level. The aim of the Alliance is to provide both national and international support for its members.
Rare Diseases Foundation of Iran (RADOIR) is a NGO as member state of ECOSOC, EURORDIS, RDI, ICORD , Rare Connect, ... and 100% independent and private sector in Iran which was established in 2008 and believes in the theme " Rare Disease Patients Without Borders" RADOIR is the only NGO in charge of rare diseases which has been invited to establishment of Rare Diseases NGO Committee. About 150,000 rare patients are supported with free of charges services 24 hours by RADOIR. We are the only data reference for supporting the patients all over in Iran. There are partner societies with RADOIR as : ALS, MPS, EB, CP, RP, NBIA, PKU, Lupus, Distrophy, etc. For further information, Goals & Objectives : Research and scientific studies of rare diseases and collaborating with the medical communities for diagnostic approaches for rare diseases and communicating with international counterpart institutions to share innovative ideas and findings, accordingly. Empowering rare disease patients and their families through the establishment of the relevant rare diseases societies. Rendering insurance assistance to the rare disease patients. Constructing well-equipped clinics and sub-specialty clinics, imaging centers and laboratories to provide the rare patients with free medical services . Supporting the social and financial problems of patients with rare diseases and their families Extending medical and pharmaceutical recommendations to the rare disease patients.
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Rare Diseases Lesotho Association is a Non-profit Organization, that assists all the patients affected by rare diseases in Lesotho to access supportive care and educate about Rare Diseases.
Australasian Cystic Fibrosis Conference 2019 The 13 th Australasian Cystic Fibrosis Conference (ACFC) provides a collaborative and educational forum for the CF community and CF professionals to help advance CF research and care. In 2019 our biennial conference brings together health professionals and members of the CF community from around the world to discuss and share ideas on the latest advances in CF research, care and drug development and to exchange ideas about ways to improve the health and quality of life for people with CF.
Rare disesases & disabilities Africa foundations vision is to create an African society where taboos are broken and myths demystified so that critical health issues are no longer deemed too sensitive to openly talk about.We are ultimately on a mission to become a voice for all marginalized rural Africans in extreme poverty, by initiating and leading dialogue on and around congenital, invisible terminal health conditions.