Tim Turnham

Consultant on patient advocacy and non-profit management

[Shannon Watts @shannonrwatts]

Tennessee State Rep. Justin Pearson speaks after vote to expel him from the House over participating in gun protests: “Our lives are at stake. And we're going to fight for our lives, just like they're fighting for the NRA." #TenneseeThree

[Tim Turnham @timturnham]

Panel discusses lack of diversity in clinical trials. Cannot get funding to study this because don’t have the data needed to get the funding. So the cycle persists. #PatientsasPartners2023

[Tim Turnham @timturnham]

Panel discussion with people who have been in clinical trials. African Americans comprise over 40% of Lupus patients, but only 3% of Lupus trial participants!

[Tim Turnham @timturnham]

Sarah Krug from @CANCER101—People asked what first comes to mind when they hear “clinical trial” responded: Guinea pig, research, and mistrust. We must change the mindset about trials!

[Tim Turnham @timturnham]

#PatientsasPartners2023 opens with a keynote by Mandy Gonzalez telling her story of breast cancer and the importance of being Fearless.

[Tim Turnham @timturnham]

Most cancer patients are seen in the community setting, but 80% of trials take place in academic sites. This means most patients have no access to trials that could result in different outcomes. Panel addresses how to change this at Cilinical Trial Summit @CCAlliance

[Tim Turnham @timturnham]

Panel at Clinical Trials Summit discusses role of messaging in expanding trial participation. Core premise—every patient has the right to know if a clinical trial is available that could benefit them. @CCAlliance

[Tim Turnham @timturnham]

Dr. Danielle Carnival from Cancer Moonshot program talks about reducing cancer deaths by 50% at the Clinical Trials Think Tank Summit held by @CCAlliance__

[Tim Turnham @timturnham]

Panelist from @US_FDA: “Movement of healthcare into our home is essential to the future, and technology is key. But technology must be designed to meet the needs of people. Groups like @RareDiseases have an important role in providing patient input to this.” #NORDSummit

[Tim Turnham @timturnham]

Gene/cell therapy is promising, but has high up-front costs! Long term these treatments may be cost effective. If Medicaid or private insurance cover CGT they may not see the long term savings should people transition to other plans. Should the savings be shared? #NORDSummit

[Tim Turnham @timturnham]

A critical part of treatment of rare disease is early, accurate diagnosis. Newborn screening is critical. Panel at #NORDSummit discusses issues related to this, including the need for greater resources as more treatments are made available for more diseases.

[Tim Turnham @timturnham]

Panel of speakers from #FDA speak about the role of real world data in evaluating drugs and devices. Across the agency FDA are looking for the real experience of patients, not jus t clinical data points.

[Tim Turnham @timturnham]

Could treatment advances in rare diseases happen more quickly by conducting trials based on common mutations rather than based on a specific disease? Basket trials might result in progress for multiple diseases in one study. #NORDSummit NIH town hall.

[Tim Turnham @timturnham]

Panel at #NORDSummit discussed FDA accelerated approval. This has proven critical in the rare disease space, but having confirmatory studies done remains a challenge. Does the program need to change?

[Tim Turnham @timturnham]

DEI panel at #NORDSummit discusses inequalities in research presentation. One panelist: “We set aside a % of our budget each year for DEI, ensuring we have resources to address this strategically. Our first step is to focus on data, securing data from full spectrum of patients.”

[Tim Turnham @timturnham]

#FDA commissioner Dr. Robert Califf speaks at the #NORDSummit. “Patient experience and patient engagement are critical to what we do!”

[Tim Turnham @timturnham]

Happy to be at the #NORDSummit! Already met great people and made new friends. Looking forward to important sessions and conversations.

[Tim Turnham @timturnham]

From #ECRD2022: innovation is more than just new therapies. It must include, among other factors, better systems to ensure access to care, timely diagnosis, and appropriate care delivered in manner that coordinates the multiple disciplines required to manage a rare disease.

[Tim Turnham @timturnham]

Speaker at #ECRD2022 notes that years ago no-one used MRIs in healthcare; now MRIs are common. The same level of adoption of genomic sequencing and analysis is essential if we are to accelerate diagnosis and timely treatment of rare diseases.

[Tim Turnham @timturnham]

Speaker at #ECRD2022 notes that "communication is the new innovation". A significant barrier to improved outcomes and quality of life is the lack of communication among service and health care providers such diseases require. A multidisciplinary team approach is critical.