The providing and editing of the national rare diseases document is one of the most vital activities of the Rare Diseases Foundation, and in this regard, the Rare Diseases Foundation of Iran, with a lot of endeavor and follow-up, and with the participation and cooperation of the professors and expertise of the Foundation and other universities of medical sciences, prepared and compiled the National Document of Rare Diseases of Iran, which after being approved by the Secretariat of the Supreme Council of Health and Food Safety and the cooperation and collaboration of the honorable officials of that ministry and other related institutions, was finally approved by the honorable president and announced. Undoubtedly, the declaration of this document can be a very huge and effective step in determining the duties of the institutions and beneficiaries related to these patients, providing services to rare patients and their families, and solving the problems of these patient respectfully
The EURORDIS ‘how to’ webinar series for patient organisations provides interactive training on practical skills such as how to cultivate volunteers, social media and governance. Webinar speakers include fellow patient organisation leaders, topic experts and EURORDIS team members. Each webinar will include an interactive Q&A, during which participants can ask speakers their own questions. The knowledge shared through the webinars will be useful to participants wanting to grow or improve the structure or communications of their own patient organisation.
The webinars are designed for participants from patient organisations or patients looking to set up patient organisations only.
The first EURORDIS ‘How to’ webinar was led by Claudia Crocione on “People raising” and how to find, cultivate and motivate volunteers and took place in January 2018. Watch a recording of the webinar.
Today, advocate and patients are becoming drivers in the rare disease community, but it will be hard to make strides without coming together and working towards the same goal. Join us for this RARE Webinar to discuss how foundations can break down any barriers and work together to achieve foundation and rare disease goals. Gain advice and learn best practices from those who have already taken the first steps in cross foundation collaboration.
If you are unable to attend the live webinar, still register so you can receive a link to the recorded content.Don’t forget, to access this webinar use the password: “Rare” with a capital “R”REGISTER
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Webinar to discuss the legal incorporation of RDI and overall Action Plan for 2018
On Monday 23 April, 2:00pm – 3:30pm, Zoe Alahouzou, Deputy to Chief Executive Officer of EURORDIS and Paloma Tejada, Director of Rare Diseases International, held a webinar to go over the Statutes of the new organisation and the details of the agreement with EURORDIS for continued support. This was also be the opportunity to discuss with Members, RDI’s 2018 Action Plan in view to its adoption at the Membership Meeting in Vienna.
The purpose of the webinar was to provide the Epidermolysis Bullosa community with accurate and up to date information on the results of the phase three trial of SD-101. As you know, on September 13th, 2017 Amicus Therapeutics Announced that top-line data from the randomized, double-blind, placebo-controlled Phase 3 clinical study (ESSENCE, SD-005) to assess the efficacy and safety of the novel topical wound-healing agent SD-101 did not meet the primary endpoints or secondary endpoints in participants with epidermolysis bullosa (EB). Amicus Therapeutics is committed to ensuring that the Epidermolysis Bullosa community is provided with the results of the phase three trial of SD-101 and would like the opportunity to present this information to the community via webinar.Download Slides