About Rare Disease Day - 2/29/2012

February 29, 2012 - On this Rare Disease Day, the Center for Rare and Neglected Diseases Dinner was attended by over 80 students and faculty who are engaged in study and research projects in rare diseases.

Many students from Professor Kasturi Haldar's course in Developing Health Networks in Rare and Neglected Diseases joined in a celebration of the Rare Health Exchange (RHE) website launch. The website represents a student collaboration to assist in rare disease research, education and service to families. Professor Haldar described the work of 6 successive classes to develop and validate the model used by the student collaborative. The RHE initiative will involve future generations of students in the work of developing natural histories for rare diseases in a process similiar to CRND's recent collaboration with the NIH's NP-C Disease Natural History Study headed by Dr. FD Porter and Nicole Yanjanin, MSN. (To read more about the background and methodology undergirding this undergraduate course and project, please visit our NP-C page and download a copy of the PLoS One article, which demonstrated the validity of the natural history development model).

The RHE website was introduced by program coordinator, Marisa Truong who invited visitors to send their thoughts and feedback about this innovative new website and project. Then, the audience participated in a challenging cloud-response survey on rare diseases prepared by students, Natalie Bott and Jennifer Van Trieste and facilitated by Dr. Pam Tamez. Ending the evening in the key of harmony, members of the Notre Dame Glee Club delighted everyone with a serenade and moving rendition of Notre Dame's devotional song to our Alma Mater.

Rare Disease Day is honored each year at the end of February to remember all the people around the world who suffer from one of the nearly 7-8,000 identified rare diseases. The number of rare disease patients in the US alone is estimated to be 30 million. Considering the extraordinarily difficult struggles accompanying these complex, mystifying and often life-threatening illnesses, we must also number the loving families and communities who stand in solidarity with courageous patients - their numbers are in the hundreds of millions in the US alone.

The Rare Disease Day website reports: "80% of rare diseases have identified genetic origins....50% of rare diseases touch children."Around the world, numbers expand exponentially. 1 out 10 people is estimated to have a rare disease although the prevalence for each disease per se is low - characterized as below 200,000 in the US.

The growing dialogue among all the rare disease communities and their supporters has allowed a clearer idea of the scope of the problem to emerge. The result of this understanding is that in recent years the National Institutes of Health and Congress have taken greater interest in expanding resources for the problem - along with governmental and health organizations around the world. Those who love people with rare diseases know how crucial it is to persevere in the communal task of educating the public at large and our civil servants and representatives about the too quiet war being waged against tragic suffering by patients, families, medical personnel and care-givers.

Rare Health Exchange Launch Day

February 29, 2012 - The Rare Health Exchange (RHE) website launches. RHE is a web-based student collaboration to advance research, education, advocacy and patient support for the rare disease community. The RHE initiative has been supported from incubation to launch by a diverse group of sponsors including the Deans of the Colleges of Science and Engineering, the Office of the Vice-President of Research, the FISH non-profit organization, the Center for Social Concerns and the leadership of the CRND. Visit the Rare Health Exchange website.





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