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Rare Disease Remove


October 2014
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rare disease Press Releases

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By Cholangiocarcinoma Foundation
This story will resonate with anyone facing a cancer diagnosis or other life-altering event.

By International Pemphigus Pemphigoid Foundation
The public is invited to show their support at the California State Capitol on February 27, 2104 for the millions of people affected by rare diseases living around the world, across the county, and down the street.

By Cures Within Reach
In recognition of the 7th Annual Rare Disease Day on February 28, two Chicago-area nonprofit organizations are joining forces by repurposing music and medicine to raise awareness of rare diseases through a grassroots campaign to help children.

By Cures Within Reach
Understanding Drug Development will be the second webcast in the RARE Webinar Series providing relevant information to patients and caregivers battling rare diseases, which are defined as diseases that affect fewer than 200,000 people in the US and...

By CADASIL Association
CADASIL is one of approximately 7,000 rare diseases affecting 30 million Americans. CADASIL is now listed at the National Multiple Sclerosis Society as a condition a doctor needs to rule out before diagnosing a patient with MS.

By SavingCase
The Fowler family recently relocated to the Chicago area to get specialized medical treatment for their son with Hunter Syndrome. Filmmaker Joey Howell will film them as a part of his documentary at Lurie Children's Hospital on October 16/17.

By SavingCase
To learn how to raise more awareness of and funding for research about her son's rare disease, Hunter Syndrome, mom Melissa Hogan wrote a moving essay to win a scholarship to the Mayo Clinic's Social Media Week events.

By Alto Marketing
Customer and company experts to discuss identifying causative mutations using arrays and sequencing

By ASHA Public Relations, LLC
NBIA Disorders Association will join the National Organization for Rare Disorders in observing Rare Disease Day on Wed., Feb. 29 to focus attention on patients affected by rare diseases, like Neurodegeneration with Brain Iron Accumulation (NBIA)

By Caring for Carcinoid Foundation
The Board of Directors of the Caring for Carcinoid Foundation is pleased to announce the appointment of Ron Hollander as its new Executive Director.

All Press Releases

By Cholangiocarcinoma Foundation
This story will resonate with anyone facing a cancer diagnosis or other life-altering event.

By Siren Interactive
Chicago, IL (April 10, 2014)—Wendy White, Founder and CEO of Siren Interactive, will conduct a pre-conference workshop entitled Critical Issues in Patient Advocacy Engagement & Collaboration: How Do We Find Common Ground? at the World Orphan Drug...

By Siren Interactive
Siren Interactive Developed a Rare Disease Day infographic Focusing on the Struggle to Diagnosis Rare Diseases

By International Pemphigus Pemphigoid Foundation
The public is invited to show their support at the California State Capitol on February 27, 2104 for the millions of people affected by rare diseases living around the world, across the county, and down the street.

By Siren Interactive
MIT’s H@cking Medicine Program Will Deliver Technology Platform for Global Genes™ to Provide Novel Tools to Help Physicians Speed Diagnosis of Rare Disease Patients

By Cures Within Reach
In recognition of the 7th Annual Rare Disease Day on February 28, two Chicago-area nonprofit organizations are joining forces by repurposing music and medicine to raise awareness of rare diseases through a grassroots campaign to help children.

By Cures Within Reach
Batten Disease is a fatal, rare genetic disease affecting the nervous system and most often affecting children. Two families in the Chicago area touched by Batten are making a big difference in research through funds raised by their organizations.

By Cures Within Reach
Understanding Drug Development will be the second webcast in the RARE Webinar Series providing relevant information to patients and caregivers battling rare diseases, which are defined as diseases that affect fewer than 200,000 people in the US and...

By Cures Within Reach
Jasper Against Batten at Cures Within Reach, a 501(c)3 not-for-profit located in IL, is collaborating with an int'l coalition to fund “Global Gene Transfer for Batten Disease” research at the UNC Gene Therapy Center, announced Dr. Bruce Bloom.

By Cures Within Reach
Each year the designation of the final day of February as Rare Disease Day generates increased awareness of the 7,000-plus rare disorders and fuels a greater urgency to develop more treatments for rare disease patients.

By CADASIL Association
CADASIL is one of approximately 7,000 rare diseases affecting 30 million Americans. CADASIL is now listed at the National Multiple Sclerosis Society as a condition a doctor needs to rule out before diagnosing a patient with MS.

By www.creativebiomart.net
After years of development and repeated rejections, uniQure finally got permission to market its gene therapy—Glybera.

By SavingCase
The Fowler family recently relocated to the Chicago area to get specialized medical treatment for their son with Hunter Syndrome. Filmmaker Joey Howell will film them as a part of his documentary at Lurie Children's Hospital on October 16/17.

By Boys with Bigger Hearts
For the past year, documentary filmmaker Joey Howell has been filming a documentary called Boys with Bigger Hearts about the rare disease Hunter Syndrome. The project is raising funds via Kickstarter to finish the filming and production.

By SavingCase
To learn how to raise more awareness of and funding for research about her son's rare disease, Hunter Syndrome, mom Melissa Hogan wrote a moving essay to win a scholarship to the Mayo Clinic's Social Media Week events.

By Alto Marketing
Customer and company experts to discuss identifying causative mutations using arrays and sequencing

By Julie A. Springer
The Anderson Cooper Daytime Talk Show will feature a segment titled " The Boy Who Cannot Eat", discussing Eosinophilic Disorders on Friday, March 23, 2012

By Julie A. Springer
APFED, representing those living with eosinophil associated disorders, joins NORD to create awareness of rare diseases on Rare Disease Day, February 29, 2012.

By ASHA Public Relations, LLC
NBIA Disorders Association will join the National Organization for Rare Disorders in observing Rare Disease Day on Wed., Feb. 29 to focus attention on patients affected by rare diseases, like Neurodegeneration with Brain Iron Accumulation (NBIA)

By Caring for Carcinoid Foundation
The Board of Directors of the Caring for Carcinoid Foundation is pleased to announce the appointment of Ron Hollander as its new Executive Director.

By DrugPatentWatch.com
DrugPatentWatch.com announces new Orphan Drug Exclusivity report

By Onit Marketing
Jacob's Cure participating in Chase Community Giving Project. Choose Jacob's cure as the charity you support and help ensure Jacob;s spot as a top 200 charity

By W. Mark Dendy
W. Mark Dendy has too much, and he is trying to get rid of it! Dendy, author of "The Cascade Effect: A Biologist Shares His Faith and His Story Living with Wilson's Disease" has a rare genetic condition that results in toxic copper buildups.

By Chris Hawkins
A weekend of special events, featuring a 4-time Olympic athlete, is coming to the North Mecklenburg / Concord area on October 3rd and 4th – you don’t want to miss this!

By Julie Beyer, MA, RD
An estimated 3 to 8 million people have symptoms of “interstitial cystitis” (IC or Painful Bladder). IC causes frequent urination, pelvic pain, and urinary urgency. Treatments are evolving including proof that food plays a key role in symptoms.

By Uplifting Athletes, Inc.
The Penn State Football Uplifting Athletes fifth annual Lift For Life® event was a tremendous success.



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