CheckOrphan

19/11/2021

WordPress programming, database skills needed!

www.CheckOrphan.org is dedicated to helping the 100s of millions of people living with rare diseases by empowering them with news and information. And we do it like no other website.

Come help us do it better! We are looking for , and if you are an agency or have you own company we can discuss providing you exposure on so as we grow, so can you!

Well, he did it! THREE marathons in three days to raise money for the Huntington's Disease Association. We can't thank George enough for all that he has done for the charity and those affected by 💚 https://twitter.com/georgerainsford/status/1459938750641983498

07/02/2020

Looking to use your coding prowess for good? Millions of people living with rare diseases depend on CheckOrphan daily and CheckOrphan needs your help to better serve them.

Do you have experience with , , theme development, plugin development, integration, or app planning and development, and , which the current site uses. PHP/Python and other scripting experience is a plus.

If so, come join the CheckOrphan Web Development Team.

Contact (derhamr@checkorphan.org) or learn more here https://lnkd.in/gXad93b

Your source for news & information about rare diseases & orphan products

10/09/2019

Rare but collectively common
https://www.raconteur.net/healthcare/equal-access-rare-disease

Research into rare disease treatment is primarily focussed on Western countries and urban areas. Now the fight is on for equal access globally.

26/08/2019

Interesting talk on finding a solution https://youtu.be/T3MlUIGXN9w

Group-B Streptococcus (GBS) remains a leading cause of sepsis and meningitis in babies and a vaccine is required to prevent all types of GBS disease and to p...

26/08/2019

Don't Ever Give up. https://edition-m.cnn.com/2019/07/27/health/doug-lindsay-invented-surgery-trnd/index.html?r=https%3A%2F%2Fedition.cnn.com%2F

Doug Lindsay was starting his senior year in college when he was stricken by a mysterious illness. Doctors were baffled. He eventually realized that if he wanted his life back, he'd have to do it himself.

12/08/2019

Would you like to help make life easier for people with rare diseaes? Come volunteer some of your time with www.checkorphan.org - the leading news and information platform for rare diseases. Contact me at dorota@checkorphan.org for more information

CheckOrphan is a 501(c)(3) nonprofit organization. Contributions to CheckOrphan in the United States and Switzerland are tax-exempt to the extent provided by law.

24/06/2019

Do you love to post, tweet and message for a great cause? CheckOrphan www.checkorphan.org - the leading news and information source for rare disease has plenty of content and we need your help. Contact dorota@checkorphan.org to learn more. It is volunteering opportunity

CheckOrphan is a 501(c)(3) nonprofit organization. Contributions to CheckOrphan in the United States and Switzerland are tax-exempt to the extent provided by law.

24/06/2019

Did you know over 35 M people live with a rare disease in Europe alone? CheckOrphan is dedicated to providing news and information about all rare diseases and we need you to volunteer to be part of our News Team. Contact me at dorota@checkorphan.org to learn more

07/06/2019

Illuminate the possibilities to advance orphan drug development and maximize success by attending . Download the agenda now to learn what to expect >> https://bit.ly/2vOLJfK

06/06/2019

Join us in Boston, June 13-14, for where you will meet a mix of early-stage , leading # pharma companies, , researchers and to engage in a dialogue around . https://bit.ly/30bVkv5

04/06/2019

Bruce L. Levine, PhD, a leading innovator in the cell and gene therapy space discusses his research and outlook on cell and gene therapies, and the importance of partnerships in progressing the field. https://bit.ly/2PYtvls

Bruce L. Levine is a man you can thank for your future cell therapy

22/03/2018

Good news for patients with systemic sclerosis with interstitial lung disease, a rare disease characterized by the thickening and scarring of connective tissue of multiple organs in the body, including the lungs. The FDA's Fast Track designation will help get this much needed treatment to those in need sooner.

Click on the link below for more information:

https://www.boehringer-ingelheim.com/press-release/fdafasttrackdesignation

FDA Fast Track designation to nintedanibFDA Fast Track designation facilitates the development of new therapies that treat serious conditions and fulfill an unmet medical need. for treatment in systemic sclerosis

19/03/2018

March is Bleeding Disorders Awareness Month.
Bleeding disorders include hemophilia.
When you donate blood, you may be saving the life of a patient with a rare bleeding disorder.

19/03/2018

"Living a Rare Life" is the story of one family's journey to unlock the mysteries of a life-threatening genetic rare disease called hereditary ATTR (hATTR) amyloidosis and how examining their health history across generations proved to be critical.

Bridge the Gap is an initiative that aims to bridge gaps in knowledge about hereditary ATTR (hATTR) amyloidsis and address the importance of discussing family health history - https://hattrbridge.com/taking-the-next-step/living-a-rare-life?utm_source=LinkedIn&utm_medium=post&utm_campaign=linkedin_living_rare_life

Learn more about the here - bit.ly/2xXIymv by Alnylam Pharmaceuticals

Rare2Aware National Organization for Rare Disorders, Inc. (NORD) RareConnect Global Genes Patient Worthy

Learn more about hATTR amyloidosis on The Bridge

19/03/2018

Alnylam Pharmaceuticals is proud to launch "Bridge the Gap" - an educational initiative to help patients and their families learn more about hereditary ATTR (hATTR) amyloidosis, talk about the condition and recognize symptoms that may lead to a proper diagnosis.

Click here to learn about the - bit.ly/2xXIymv by Alnylam Pharmaceuticals

Rare America RareConnect Rare Disease Report Patient Worthy Global Genes

The Investor Relations website contains information about Alnylam Pharmaceuticals, Inc.'s business for stockholders, potential investors, and financial analysts.

13/03/2018

- NOW! - 9th European Conference on Rare Diseases and Orphan Products - 10 - 12 May 2018, Vienna.

The European Conference on Rare
Diseases & Orphan Products is the unique
forum across all rare diseases, across all
European countries, bringing together all
stakeholders - patients’ representatives,
academics, researchers, health care
professionals, industry, payers, regulators
and policy makers.

Click here for more details - ow.ly/1uo830iUzuA EURORDIS - European Rare Diseases Organisation

RareConnect Rare Diseases South Africa Rare America Rare Disease UK Rare Diseases South Africa

| | | Programme at a glance: Download programme at a glance Reasons to attend: Why attend? (healthcare industry) Why …

08/03/2018

Orphan Drugs & Rare Diseases Global Congress 2018 Europe - Will address the driving factors, policies and that will steer the development of drugs - 08 - 09 March 2018 - ow.ly/XSZH30iPlQU Paradigm Global Events Rare Diseases South Africa RareConnect