Research & Development

[Jen Cueva]

I have a huge announcement from BioNews Services–the parent company of this, and many other rare disease websites.BioNews Clinical goes live.

As part of our mission to empower, inspire, and champion the patient voice and engage, inform, and connect the global rare and chronic disease communities, we are proud to announce the launch of BioNews Clinical.

BioNews Clinical will help patients living with rare and chronic diseases connect with relevant clinical trial opportunities looking for participants. Learn more about this exciting news here.

This is an awesome tool that our company has been working towards for some time. We hope this will be a great resource for our patients and our rare disease communities, like PH. We are excited and honored to connect patients to research and clinical trial opportunities.

#WeNeedRareResearch

[Colleen Steele]

This is BIG and I hope some of our members will consider the option! If you do and care to share about it, we would appreciate the input.

[Md. Abul Kalam Azad]

I want to join in the clinical for my son. How can I join from Bangladesh? Could you please explain  elaborately about Bio news. How does it work specialty for the RV failure patient like my son. If any body help me in this regards I will be grateful to him/her.

regards

Azad

Bangladesh

[Jen Cueva]

Hi @azad, thanks for your interest. Unfortunately, as of current, the CTs that I am aware of is here in the US. I can only imagine how much this would mean if your son was eligible for a CT here.

Also, having RV failure limits some of the trials. This is one clinical trial that I read about RV function. Tyvaso is an inhaled medication. What meds are available for him there?

Tyvaso(treprostinil)

BioNews is the parent company that owns PH News. Clinical is new for us and just kicking off. If I learn more, I am happy to share.

[Md. Abul Kalam Azad]

How it Tyvaso can be used, I mean the process to be followed in using Tyvaso. Because it not available in Bangladesh. You are also requested to give me the contact details of the company from where I can get the medicine.

 

[Jen Cueva]

Hi @aisha-abdullah, I am sorry, but if you read the link for the clinical trial, it offers more details. I have not used Tyvaso, so I am not familiar, nor have I been in that CT.

The pharma company that makes Tyvaso is United Therapeutics. Maybe this link about that treatment will offer some information on how to contact them. Unfortunately, I cannot get you the medication for your son. I certainly wish it was that easy, my PHriend.

I can understand your interest.

[Author]

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