Upcoming Events on the Rare Calendar

January 25 to March 31
The Alagille Syndrome Alliance, a nonprofit organization dedicated to furthering awareness and understanding of Alagille Syndrome, has opened applications for the Alaina Kaitlyn Hahn Celebratory Scholarship for the 2018-2019 academic year. The Alaina Kaitlyn Hahn Celebratory Scholarship funds the education of high school graduates or GED credential recipients with ALGS who are entering or enrolled in an accredited U.S. university, college, or vocational school and choose to pursue higher education in the human biological, medical, or health sciences. This is a $500 scholarship for a single year and is renewable one time, subject to open competition with other applicants, for a total possible award of $1,000. Application materials are available on the ALGSA website at http://www.alagille.org or by request via email to alagille@alagille.org. The application deadline is March 31, 2018.

February 27, 2018
Findacure 2018 Drug Repurposing for Rare Diseases Conference
The annual conference will be held at the Royal College of Nursing in London. It brings together patient groups, clinicians, researchers, and life science professionals, to discuss the latest developments in drug repurposing, and its role in the future of rare disease treatment.

Alongside celebrating international Rare Disease Day 2018, delegates will hear examples of excellent practice of drug repurposing in rare diseases, and make connections with rare advocates in and outside of their respective fields. Early bird registration is available through December 11.
To register, go to https://www.eventbrite.co.uk/e/drug-repurposing-for-rare-diseases-conference-2018-tickets-39257798131

February 28, 2018
Global Genes and the Festival of Children Foundation will be hosting a RARE Carousel of Possible Dreams Celebration and Awareness Event on February 28, 2018, from 6:00 pm to 8:30 pm, at the Children’s Creativity Carousel and Museum, 221 4th Street, San Francisco. More information can be found on the Global Genes website

February 28, 2018
You are invited to join individuals with Rare Diseases, family members, advocates, physicians, legislators, and industry partners to call attention to the needs of those living with rare diseases in Colorado.  The 2018 Rare Disease Day event will take place on Wednesday, February 28th at the Colorado State Capitol from 8 a.m. to  9 a.m. in the Old Supreme Court Chamber.  We are hoping to fill the room with our united voice to raise awareness of the challenges faced by the rare disease community. This event is co-hosted by Colorado Rare and the National Organization for Rare Diseases (NORD).  Colorado Rare is a new 501(c)3 nonprofit organization, created to be a united voice in Colorado for those living with rare diseases and their families.  The event will last for one hour, and we encourage individuals and families to attend to hear advocates and medical professionals address the attending legislators. Click here to register.

May 19, 2018
The 2018 Rare Patient Advocacy Symposiuma partnership between Global Genes and the Penn Medicine Orphan Disease Center, will be held in Philadelphia. The Symposium has been developed for patient advocates to learn, connect and be inspired.  Attendees do not need to be affiliated with the MDBR and all rare patient, advocates and stakeholders are welcome to attend. More information can be found on the Global Genes website.

June 11-12, 2018 
4th World Congress on Rare Diseases and Orphan Drugs
Rare Diseases Conference 2018 serve as a bridge between researchers from academia and health care centers enhanced by its well organized scientific sessions, plenary lectures, poster presentations, world class exhibitions, diverse symposiums, highly enriched workshops and B2B meetings and it will continue the tradition of being an important focal point of the Rare Diseases scientific community and an excellent forum for academics and professionals to present their results and discuss advancements in a wide range of areas of Rare Diseases. The conference will be held in Dublin, Ireland.

More information can be found at the conference website.

If you have an event you’d like added to this calendar, send us an email

This page was last updated January 17, 2018


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