Connect, Enpower, and Inspire This free workshop will available for both caregivers and LEMS patients. Participants will learn new strategies for promoting advocacy and the development of community. The event…
The 2018 National Patient Conference SSF's National Patient Conference is the an ideal opportunity for patients with Sjögren's syndrome and their families to learn more about what it means to…
Presenting the 40th Annual Family Conference Join NTSAD for three days of education, support, and empowerment for Tay-Sachs, Sandhoff, Canavan, and GM1 patients and their families. Adult: $320 (ages 13…
This conference presents an opportunity for medical professionals to share knowledge and learn more about new research advances in clinical care and discuss the future of the craniofacial field. The…
Peter Kay, a British comedian and actor, organised a screening of four episodes of his hit TV series Car Share in order to raise awareness and donations for a charity…
This conference will be a convergence of disease experts, patients, and professionals to discuss Ehlers-Danlos syndrome and other related genetic disorders. The event will be the first conference that the…
Grab your sneakers because the 2018 Liver Life Walk is on the way, hosted by The American Liver Foundation. Thousands of people will walk to advance liver health and wellness, one…
Presenting the 61st Annual Ataxia Conference (AAC) "Fighting for Freedom" Attendees have a lot of reasons to be excited about this year's AAC. There are multiple promising treatments in trials…
International PTEN, the Harmara Tumor Syndrome Foundation, will host a Patient Symposium in Huntsville, Alabama on March 25-26th, 2018. It will discuss PHTS cancer risks, screening requirements, daily management, research…
The LGS Foundation hosts the 3rd Annual Walk n' Wheel in Orlando, FL to support research, programs and services for patients with Lennox-Gastaut Syndrome. Registration is $15. Donations are accepted.…
Join The Coalition for Hemophilia B at their 12th Annual Symposium to improve the quality of life for those living with and treating Hemophilia B.
April 9th is promising to be a beautiful day this year. By then, spring should be in full swing. For some people that phrase rings quite literally. With the return…
A “Right to Try” bill is currently being discussed by Congress. Advocates on both sides of the story present valid points to either pass or stop the bill. That’s why…
The only conference in the United States that shows guidance as how to involve patients through the process of clinical research. Industry Fees: $1,595 Early Bird - available until 2/09/18 $1,695…
Muscular Dystrophy Association will host the 2018 Clinical Conference in Arlington, VA. The meeting will bring together scientific and medical experts from private practices, academia, industry and government. It will…
The Festival of Children hosts the RARE Carousel of Possible Dreams, a Dream Team Celebration in Chesterfield, Missouri on Saturday, March 10th, 2018. The event will be filled with fun:…
In 2017, more than 450 participants at this conference gathered to learn more about the most recent research, education and all things Batten Disease. The deadline to register is June…
According to an article from lymedisease.org, Dr. Raphael Stricker is slated to speak about the future of Lyme disease diagnostics at MyLymeData2018: Seeking Cures Together. This conference is intended primarily…
Alabama Rare hosts the 3rd Rare Disease Day Advocacy Training & State House Advocacy Event in Montgomery, AL. It's a great way for advocates to get connected and meet state legislators.…
Alabama Rare is hosting the 5th annual rare disease genetics symposium with intent to educate and advise patients, caregivers and medical professionals on how to manage their disease. March 2nd:…
The Penn Medicine Orphan Disease Center invites you to Rare Disease Day with the 5th Annual Million Dollar Bike Ride in Philadelphia, PA. Cycle with fundraising: FREE Cycle without fundraising:…
Tomorrow is Rare Disease Day! There are 7,000 rare diseases and disorders that affect about 30 million Americans. Three hundred million worldwide are affected by rare diseases and 95% of those…
February 28th has become an internationally recognized day for Rare Disease awareness and advocacy. Originally reported by Rare DR, Marquette University, in conjunction with Harmony 4 Hope, H4H, will put…
Spark Therapeutics will be hosting a conference call this Tuesday. For those interested in the business side of therapy, this is an interesting opportunity to observe. Find out more about…
February 14th is Valentine's Day! Make sure to treat your valentine to a special day - and while your at it, spread the word that February 14th is also National…
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