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May 2018

2018 Rare Disease Summer Family Camp

May 31 - June 3
Hole in the Wall Gang Camp, 555 Ashford Center Road
Ashford, CT 06278 United States
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NORD is proud to again be working with The Hole in the Wall Gang Camp on a rare disease summer family camp in Connecticut! The Hole in the Wall Gang Camp opens its doors to children and families to ensure that every child can experience the transformational spirit and friendships that go hand-in-hand with camp.  For the second year, they will be hosting a special Summer Family Camp for children and families impacted by rare diseases to join together for a weekend…

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June 2018

Suzanne Wasserman Celebration of Her Life

June 4 @ 6:00 pm - 8:00 pm
Akin Gump Strauss Hauer & Feld LLP, 1 Bryant Park 44th Floor
New York, NY 10036 United States
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People have been telling the story of the Lower East Side for generations. Few people have told that story in the past few decades with the passion, insight, and generosity of Suzanne Wasserman. On June 26, 2017, the well-known and widely respected historian passed away from progressive supranuclear palsy (PSP), an early onset neurodegenerative disease that is currently incurable. She was 60 years old. Suzanne was director of the Gotham Center for New York City History at the City University of New…

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Speaking of NEC: Unplugged

June 11 @ 8:00 am - 4:00 pm
Courtyard by Marriott Hartford Cromwell, 4 Sebethe Drive
Cromwell, CT 06416 United States
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The inaugural Speaking of NEC: Unplugged event is a one-day regional conference focused on identifying practical solutions for reducing the devastating effects of Necrotizing Enterocolitis (NEC) on premature infants and their families. The Morgan Leary Vaughan Fund appreciates the support of Prolacta Bioscience, The Petit Family Foundation, and ThriveRX for this important event and welcomes other experts, influencers, and sponsors who serve our mutual mission.

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Orphan Drug Act Webinar: What Everyone Affected by Rare Disease Should Know

June 12 @ 2:00 pm - 3:00 pm

Have you ever wondered how pharmaceutical companies are encouraged to develop therapies for rare diseases? And whether or not this system is working? We will cover these topics and more in an educational webinar on June 12. Join us as NORD's Director of Federal Policy Paul Melmeyer discusses the importance of the Orphan Drug Act, gives an overview of how a drug is developed, and dispels some of the common myths about the process. This webinar will be perfect for…

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IAMRARE Registry Platform Demo, NORD Research Department-June

June 21 @ 3:00 pm - 4:00 pm
Virtual Demonstration

NORD's IAMRARE Registry Platform is an easy to use system that allows organizations to rapidly launch a high-quality, customized registry to collect the data needed to define the natural progression of disease and advance product development. Interested in receiving a demonstration on how the system works? Attend one of our free demos hosted by NORD's research team. Please contact research@rarediseases.org for more information. *Date and time subject to change

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AAMDSIF Patient & Family Conference – Seattle, WA

June 23 @ 8:30 am - 4:10 pm
Fred Hutchinson Cancer Research Center, 1100 Fairview Avenue North
Seattle, WA 98109 United States
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Mark your calendars! AAMDSIF is hosting seven national “Living with Aplastic Anemia, MDS, PNH” patient and family conferences in cities around the country. Each free conference offers incredible learning opportunities from leading medical experts, the ability to connect directly with other patients and caregivers and hope for the future.

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Eighth Biennial Cornelia de Lange Syndrome Scientific & Educational Symposium

June 27 - June 28
Marriott Minneapolis City Center, 30 S 7th Street
Minneapolis, MN 55402 United States
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Since 2004, the CdLS Foundation has sponsored a symposium in conjunction with its biennial national family conference. Attendees include physicians in various clinical disciplines, clinical/molecular geneticists, genetic counselors, and research scientists. In 2010, an Educational Symposium was added, offering teachers and allied health workers an opportunity to learn more about CdLS and how it applies to their professions. Continuing Medical Education Credits and Continuing Education Units are available.

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July 2018

APFED’s 2018 Patient Education Conference for Eosinophilic Gastrointestinal Disorders (EGIDs)

July 6 - July 7
Hyatt Regency Aurora-Denver, 13200 East 14th Place
Aurora, CO 80011 United States
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This year marks APFED’s 16th Annual Patient Education Conference on Eosinophilic Gastrointestinal Diseases. Over the course of those 16 years, thousands of patients and families have come together to learn about these diseases, gain practical tips for day-to-living, and to learn the latest breakthroughs in disease research. Health care professionals have attended to enhance their understanding of these diseases and patient needs, and have advanced their careers through this amazing learning opportunity. Eos Connection 2018 promises to be no different! Attendees…

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Public Meeting on Patient-Focused Drug Development for Chronic Pain

July 9 @ 10:00 am - 4:00 pm
FDA White Oak Campus, 10903 New Hampshire Ave., Building 31 Conference Center, the Great Room (rm. 1503)
Silver Spring, MD 20993 United States
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On July 9, 2018, FDA is hosting a public meeting on Patient-Focused Drug Development for Chronic Pain. FDA is interested in hearing patients’ perspectives on chronic pain, views on treatment approaches, and challenges or barriers to accessing treatments for chronic pain. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies. The event will be broadcasted…

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OIF National Conference 2018

July 13 - July 15
Renaissance Baltimore Harborplace Hotel, 202 East Pratt Street
Baltimore, MD 21202 United States
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More than 600 members of the OI community will come together for three days of specialized sessions on managing OI, free medical consultations and fun social events for attendees of all ages! The entire conference will take place at the Renaissance Baltimore Harborplace Hotel in Baltimore, Maryland.

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