Industry Leaders Team Up to Advocate for Rare Disease Patients Despite the COVID-19 Pandemic

By Natalie Homan from In The Cloud Copy

Two businesses that advocate for patients with rare and orphan diseases announced recently that they are teaming up to help patients get the care and connection they need during the COVID-19 pandemic.

FFF Enterprises is a leading supplier of biopharmaceuticals, plasma products, and vaccines in the United States. FFF also supports many organizations like the National Hemophilia Foundation, the National Organization for Rare Diseases, and the Myositis Association as part of its commitment to give back to the community.

BioNews Services is a leading online research company that publishes reliable, up-to-date articles and stories about rare diseases and patients. BioNews runs over 65 websites to help patients share their stories, learn about treatment methods, and connect with others who share their situation.

The Need for Connection

The isolation that is the new normal for so many may not be so new for those who suffer from a rare disease. Many patients must self-isolate themselves during flu season or if their immune system is compromised. The pandemic’s potential to create total isolation from friends and family adds new layers of loneliness and depression that may not have been present before.

With so many already active and engaged communities of rare disease patients, BioNews aims to help patients connect to each other despite the enforced isolation. They want to make sure patients feel connected to each other and to their support communities for as long as they are forced to isolate at home.

Roadblocks to Treatment

One of the difficulties of treating rare diseases is that treatments may be very specialized and expensive. With the economy and medical community in so much commotion, some patients may not have been able to get the medications they need, either because the manufacturer has a supply issue, or because other patients have hoarded medicines for themselves. FFF is actively communicating with pharmaceutical manufacturers to ensure that patients have continuing access to the medicines they need.

Another problem in treating many of these conditions is that research into the best way to approach treatment is ongoing. Most rare and orphan diseases haven’t been studied and documented for decades as have more common conditions like diabetes or heart disease. Universities and commercial companies are constantly testing new treatments and drugs for rare diseases, but most of the clinical trials they conduct depend on having patients come to the study site, at least initially. Many studies have been forced to stop entirely to comply with COVID-19 restrictions.

With enforced isolation and quarantining, many patients don’t feel like they can leave their homes, and few are looking for more reasons to do so. Patients who are particularly vulnerable to catching an infection may even be afraid to have a nurse come treat them in their homes. With its vast outreach to rare disease patients already in place, BioNews Services hopes to connect patients with the services that FFF Enterprises can offer. These services include clinical trials that can be conducted safely now or that will begin again once the pandemic is contained.

FFF and BioNews hope that together they can create stronger connections between patients and caregivers, as well as between patients and treatments that will last far beyond the COVID-19 pandemic.

Read the original story here.


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