BioPontisAlliance

BioPontis Alliance for Rare Disease - A nonprofit with the mission to Advance Treatments for Rare Disease

[BioPontisAlliance @BioPontis]

Facts...that should stop you in your tracks. This day of awareness to ignite research and results. #RareDiseaseDay 2019.

[BioPontisAlliance @BioPontis]

Another interesting article stating the need for innovative solutions to address rare genetic diseases.

https://t.co/8fN6HNosAR

[BioPontisAlliance @BioPontis]

Don't forget to follow us on Instagram!

[BioPontisAlliance @BioPontis]

Watch Part 2 of "Living with CMT", one of the most common inherited neurological disorders & its impacts on 1 family, as we hear testimony from the VP of CMT France, @libanycmtfrance @AssoCMTFrance
#CMTAwareness

https://t.co/RE9usGkEcv

[BioPontisAlliance @BioPontis]

Please checkout our latest video on our YouTube Channel "Living, with CMT- Part 1". A big thank you to @AssoCMTFrance and especially to @libanycmtfrance

#CMTAwareness #CMTStrong

https://t.co/rkbk36UPYJ

[BioPontisAlliance @BioPontis]

Only a few more days before the 8th conference on Orphan Drugs & Rare Diseases in Boston!
Check the agenda on the link below:
https://t.co/P8X0ur6aPr
#biopontis #conference #rarediseases

[BioPontisAlliance @BioPontis]

#CMTAwareness

[Christina @ChrisAz2015]

#CMT #CharcotMarieTooth can mean as progression comes game changes happen-from using a shower chair, commode, AFOs, wheelchair, walker, powerchair giving up driving or if ur lucky moving 2 handcontrols/accessible vehicle & more challenges that could break us but WE r #CMTstrong

[BioPontisAlliance @BioPontis]

Orphan Drugs and Rares Diseases Conference UPDATE:

Mr. Basile's talk will aim to inform how Impact Investment can partner with Philanthropy to turn academic research into treatments.
#biopontis #RareDiseases

[BioPontisAlliance @BioPontis]

We are pleased to announce that we will be part of the 8th Orphan Drugs and Rare Diseases conference in Boston at the end of this month. Mr Richard Basile, CEO and Co-Founder of our organization will be attending this event as a guest speaker.
More info soon ☺️

#RareDisease

[BioPontisAlliance @BioPontis]

#CMTawareness #CMTstrong

[Jill Price @MsJIllAPrice]

What Does ‘Fair’ Mean? https://t.co/dHGrkRKoxg. #cmtwarrior #cmtwegotthis #cmtawareness

[BioPontisAlliance @BioPontis]

#CMTawareness

[Lizzy Bunton @shopgirlygm]

September is #CMTawareness month and @NRSHealthcare interviewed me to help write an article on what having severe #CMT is like. Please share this with all of your followers! @CMTASTAR @CMTUnitedKdom @CMTNeuropathy

[BioPontisAlliance @BioPontis]

Don't forget to shop with Amazon Smile selecting BioPontis Alliance!

For every purchase you made, Amazon will make a donation back to us which will contribute to the development of our current scientific research projects.
#givingtuesday

[BioPontisAlliance @BioPontis]

Charcot Marie Tooth Awareness month starts today!

#biopontis #charcotmarietoothdisease #spreadawareness #researchdevelopment

[BioPontisAlliance @BioPontis]

According to the 8th edition of the annual Impact Investor Survey from the GIIN, only 19% of respondent claimed that the Healthcare sector is one of the 3 top sector in which they deploy capital.
#NeedforChange
Source:
https://t.co/UQ9gIQlUlg

[BioPontisAlliance @BioPontis]

Not really sure what impact investing is?
This video will give you some quick info: https://t.co/3UkZeeHoXL
#biopontis #impactinvesting

[BioPontisAlliance @BioPontis]

How is impact investing partnering with philanthropy essential for the development of new rare genetic disease treatments?

Read this article from our CEO, Mr Basile: https://t.co/DaudfxGDjg

#biopontis #impactinvesting #Philanthropy #CALLtoAction

[BioPontisAlliance @BioPontis]

Did you know?
The number of orphan medicine approvals does not increase with the number of patients suffering from a specific rare genetic disease.
Source:
https://t.co/snbMPXmVly…/DevelopingProduc…/Events/ucm598211.htm
#biopontis #RareDisease #Awareness #orphandrug

[BioPontisAlliance @BioPontis]

A glimpse into the History of Orphan Drugs in Europe:
Established in the 2000, the EMA (European Medicines Agency) is in charge of orphan medicines in the EU.
Last year, 92 medicines were recommended for marketing authorization but only 14 medicines were authorized.
#bionpontis

[BioPontisAlliance @BioPontis]

A glimpse into the History of Orphan drugs in the USA:

In 1983, the first Orphan Drug Act was enacted in the United States to facilitate the development of medicines for rare diseases. Last year, 77 drugs and biologic treatments for rare diseases were approved.

[BioPontisAlliance @BioPontis]

What is an Orphan Drug?

Orphan drugs are medicinal products intended for the diagnosis, prevention or treatment of rare diseases.
To encourage their development, specific regulation policies were created and incentives are offered.
See the regulation policies below!