Oley Regional Conference – Minneapolis, Minnesota

• Post author:Patient Worthy Contributor
• Post published:May 6, 2017
• Post category:

Event Contact: Andrea Guidi [email protected] (518)262-5079 or (800)776-6539

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Cystic Fibrosis Research Inc. Embrace Retreat

• Post author:Patient Worthy Contributor
• Post published:May 5, 2017
• Post category:

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Are You Ready for NCATS Advocacy Day?: Partnering with Patients for Smarter Science

• Post author:Patient Worthy Contributor
• Post published:May 4, 2017
• Post category:Rare Disease

National Center for Advancing Translational Sciences (NCATS) is a division of the NIH, located in Bethesda MD. On Friday June 30th they will have  an all day program to discuss…

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Get Ready… The NYC Dystonia Patient Symposium is Coming Up Next Week!

• Post author:Erica Zahn
• Post published:May 3, 2017
• Post category:Dystonia/Rare Disease/Timely

A few years ago, a friend of mine who is a violinist suddenly developed a movement disorder called focal dystonia. His neck began to have intermittent muscle contractions. His head would…

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The 14th International Symposium on Myelodysplastic Syndromes

• Post author:Patient Worthy Contributor
• Post published:May 3, 2017
• Post category:

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Upcoming IDF Session on CGD!

• Post author:Kathy Devanny
• Post published:April 28, 2017
• Post category:CGD/Rare Disease

A special session on CGD will be presented at the 2017 IDF National conference. CGD is a primary immunodeficieny disease and is characterized by skin infections, both fungal and bacterial,…

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Duchenne Muscular Dystrophy Motivated These Parents to Start the Romito Foundation

• Post author:Erica Zahn
• Post published:April 21, 2017
• Post category:Duchenne Muscular Dystrophy/Rare Disease/Timely

Duchenne muscular dystrophy (DMD) affects approximately 15,000 to 20,000 young boys in the US, but for the Richard and Jamie Romito family, those numbers mean nothing. All three of their sons…

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MGFA Conference Take-Aways: Becoming a Take-Charge Patient

• Post author:Rebekah
• Post published:April 19, 2017
• Post category:Myasthenia Gravis/Rare Disease

At the 2017 MGFA conference a panel consisting of Denise Trombly, Kim Eldridge, Mike Ursic, and Nancy Law presented “Becoming a “Take Charge” Patient: A Proactive Approach to Managing Your…

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2017 International Vasculitis Symposium

• Post author:Kathy Devanny
• Post published:April 19, 2017
• Post category:Behçet's/Churg-Strauss Syndrome/Timely

Do you have VASCULITIS? Associated with: Behcet’s Disease, Churg Strauss Syndrome, Cryoglobulinemia, Giant Cell Arteritis (Temporal Arteritis), Granulomatosis with Polyangiitis (formerly Wegener’s Granulomatosis), Hpersensitivity Vasculitis (Leukocytoclastic), IgA Vasculitis (Henoch-Schönlein Purpura), Kawasaki…

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Upcoming Chicago MDS Event in May

• Post author:Rebekah
• Post published:April 17, 2017
• Post category:Myelodysplastic syndromes/Rare Disease

When: May 20th Where: University of Chicago Medicine Center for Care & Discovery CCD Board Room 5700 S. Maryland Ave Chicago, IL 60637 Presenters: Olatoyosi Odenike, MD Andrew Artz, MD,…

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Cystic Fibrosis Research Inc. Event Just Three Weeks Away! Deadline to Register is Tomorrow

• Post author:Patient Worthy Contributor
• Post published:April 12, 2017
• Post category:Cystic Fibrosis/Rare Disease

CFRI's third annual Embrace Retreat is happening May 5th - May 7th! The Embrace Retreat is specifically geared toward mothers of children and adults battling cystic fibrosis. Just in time…

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How Are You Celebrating World Parkinson’s Day?

• Post author:Nia
• Post published:April 11, 2017
• Post category:Parkinson's Disease/Rare Disease/Timely

Mark your calendars because World Parkinson's Day is here!! Winter is (mostly) over and spring is hot (emphasis on hot) on it's heels! And, of course, April showers means we're…

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Fishing Tournament to Raise Money for Transverse Myelitis on May 6, 2017 in Alabama

• Post author:Nia
• Post published:April 6, 2017
• Post category:Rare Disease/Timely/Transverse myelitis

What is the perfect way to spend a Saturday? Well, if you are a fishing enthusiast and enjoy raising money for a cause I have the perfect event for you.…

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Hemophilia Federation of America’s Annual Symposium

• Post author:Patient Worthy Contributor
• Post published:April 6, 2017
• Post category:

Details are below, but for more information, click here.

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Craniofacial Society of Great Britain and Ireland Annual Scientific Conference

• Post author:Patient Worthy Contributor
• Post published:April 5, 2017
• Post category:

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Tuberous Sclerosis and Autism Event April 1 at BadWolf Brewing

• Post author:Nia
• Post published:April 3, 2017
• Post category:Rare Disease/Timely/Tuberous Sclerosis Complex

The On Tap for TS event is Saturday April 1, 2017 from 4 - 8 pm to benefit tuberous sclerosis complex (TSC) and autism research. It will be at BadWolf…

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Upcoming Free MDS Forum

• Post author:Rebekah
• Post published:April 3, 2017
• Post category:Myelodysplastic syndromes/Rare Disease

Upcoming event made possible by the MDS Foundation! Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver, this event will give you the opportunity to learn…

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Endocrine Society’s Endo 2017

• Post author:Patient Worthy Contributor
• Post published:April 1, 2017
• Post category:

Advance Registration: February 28, 2017 Housing Request: March 7, 2017 Register here.

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Hurry Up and Laugh for TSC on April 2nd

• Post author:Nia
• Post published:March 31, 2017
• Post category:Rare Disease/Timely/Tuberous Sclerosis Complex

The Tuberous Sclerosis Alliance works to bring awareness to tuberous sclerosis complex (TSC). They also work to raise funds for TSC. Over the years, some of the greatest in the…

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The Coalition for Hemophilia B 11th Annual Symposium

• Post author:Patient Worthy Contributor
• Post published:March 31, 2017
• Post category:

In addition to the event details below, visit The Coalition for Hemophilia B's Facebook page here.

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2017 CRF Day of Hope Family Conference

• Post author:Patient Worthy Contributor
• Post published:March 30, 2017
• Post category:

The Cystinosis Research Foundation Day of Hope Family Conference registration closes on March 17th! So register now.

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Get Ready for the 5th Annual Dysautonomia International Conference!

• Post author:Erica Zahn
• Post published:March 28, 2017
• Post category:Dysautonomia/Rare Disease/Timely

Have you ever felt woozy when you stood up? And maybe it was so bad you actually fainted. One possibility is you have a form of dysautonomia called postural orthostatic…

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Myasthenia Gravis Foundation of America 2017 National Conference

• Post author:Patient Worthy Contributor
• Post published:March 26, 2017
• Post category:

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2017 NORD Rare Impact Awards Honorees Announced

• Post author:Patient Worthy Contributor
• Post published:March 17, 2017
• Post category:Rare Disease

The Rare Impact Awards for 2017 will be held this year, on May 18th, at 6:30 pm in Washington, DC. The Rare Impact Awards is the National Organization for Rare Disorders (NORDS)…

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Get Your Learning On – April 17, 2017 – World Hemophilia Day

• Post author:Erica Zahn
• Post published:March 13, 2017
• Post category:Factor VII deficiency/Rare Disease

April 17, 2017 is World Hemophilia Day. This is significant not only for people with hemophilia, but also for those with other bleeding disorders like von Willebrand disease (vWD). If…

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