World Rare Disease Day took place Thursday and the University recognized the international event Feb. 23 with lectures and discussion panels, but Notre Dame offers a number of opportunities for students to be involved with rare disease studies throughout the year. Marisa Truong, program coordinator for the Center for Rare and Neglected Diseases (CRND), said the Feb. 23 event aimed to encourage others to become interested and involved in the rare disease community. “The goal of the event was to engage our students, faculty, patient families and our local community in a group discussion in order to find ways we can all collaborate to become better advocates for the rare disease community,” Truong said. The program consisted of four discussion panels, which focused on rare disease research, ethical dilemmas within rare disease work, patient family stories and student outreach through Rare Health Exchange, a collaborative that allows undergraduates to assist researchers by defining natural histories of the diseases. In hopes to increase awareness of rare and neglected diseases, CRND offers an undergraduate course titled “Developing Health Networks in Rare and Neglected Diseases.” Truong said the course has developed into a student collaborative with the Rare Health Exchange. Students are trained to assess rare disease medical records in order to help physicians and researchers develop natural history studies for them. “These studies are extremely useful for improving disease management, accelerating the time of diagnosis, and new drug development,” Truong said. Additionally, the Center hosts a Clinical Translational Seminar Series in which distinguished professionals who work with the rare disease community are invited to showcase the type of rare disease work interested students could become involved with. Patients and families directly affected by such diseases are also given the opportunity to share their story and raise awareness for the cause, Truong said. “[In this] patient outreach component, students engage with patient families in order to help them submit medical records to us for assessment,” Truong said. Truong said implementing rare disease education at the undergraduate university level is important. In this way, more of our communities are given an earlier exposure to the presence of rare diseases and can be informed of what they can do to help, she said. “[Through undergraduate awareness programs] people are then exposed to a variety of ways they can continue to advocate for rare diseases and are made aware of the socioeconomic and cultural issues involved,” Truong said.
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It deals with the preparation of financial reports by pension schemes.Updates to the 2007 guidance became necessary after the UK authorities consolidated UK GAAP into a single accounting standard, FRS 102.FRS 102 is a fundamental reform of financial reporting in the UK.In essence, it is a localised version of the International Financial Reporting Standard for Small- and Medium-sized Entities.Alongside this change, UK legislative and regulatory actions have also made a number of changes to the legal and regulatory environment for pension funds since 2007.In particular, the past seven years have seen the introduction of auto-enrolment, as well as an increasing number of pension schemes entering the Pension Protection Fund.The PRAG issued its draft SORP in April on a three-month comment period.The changes take the form of wide-ranging amendments to the 2007 SORP.Comments on the proposals closed on 16 July.The PRAG invited views from interested parties on a series of changes that affect annuities, investment-risk disclosures, the fair-value hierarchy, financial statement presentation, auto-enrolment, legislative disclosure requirements and concentration of investments.But despite widespread support for the PRAG’s approach in the document, experts who spoke with IPE cited areas for concern.In a recent press notice, the ACCA warned that the PRAG must “more fully” explain the concept of “significant” when it applies to a new requirement to account for matching annuities on the balance sheet.The accountancy body also called for the PRAG to include “an indication” of the “level of materiality applied to disclosures in the example financial statements” in the SORP.And in an interview with IPE, ACCA spokesman Paul Cooper warned that the new SORP would lead to inconsistencies between statutory reporting requirements for disclosures about investments and the requirements of UK GAAP.Urging the DWP to act, Cooper, a corporate reporting manager with the ACCA, said: “It is important changes can be made so the legal requirements are consistent with the revised SORP.”David Hutchings of Hymans Robertson said: “The SORP talks about information to quantify risk. A single number in the accounts could be misleading because that number in isolation might look large and yet say nothing about risk mitigation.“We would like to see a requirement for entities to provide a better explanation of risk – perhaps through the inclusion of an updated statement of investment principles as an appendix to the Report and Accounts to avoid putting big figures into accounts that might be misleading.” Pension fund accountants in the UK have broadly welcomed proposed new guidance from the Pensions Research Accountants Group (PRAG) dealing with the preparation of financial reports by pension funds.In a statement on the draft guidance, global accountancy body the Association of Chartered Certified Accountants (ACCA) said it thought the changes detailed in a draft Statement of Recommended Practice (SORP) would “bring clarity”.But the ACCA warned that interested parties must now lobby the Department for Work & Pensions (DWP) to bring forward legislation to align investment disclosures under UK law with developments in UK generally accepted accounting principles (GAAP).The draft SORP sets out a series of amendments to a 2007 SORP.