On January 21, 2021, the Rare Disease Legislative Advocates (RDLA) hosted an online webinar that focused specifically on the subject of advocating for rare disease health policy at the state…
Rare Disease Legislative Advocates' Special State Advocacy Webinar January 21, 2021 The special webinar from the RDLA will focus on rare disease advocacy at the state level. Attend this session…
Kohl's has brought a new clothing line whose target audience is rare disease patients. The new clothing includes adaptive options to allow easy access to medical ports and easy dressing.…
According to a recent article in Statnews, providers must obtain prior authorization from an insurer for several reasons; to start, the insurer often requires physicians to justify prescribing a…
Note: This press release was republished with permission from the EveryLife Foundation for Rare Diseases. The Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases,…
Research During COVID Many medical research projects have faced hurdles since the pandemic has started. Regulators have changed development timelines, and many have had to delay their clinical trials due…
The Partnership A new partnership has just been announced between Mendelian, a digital health company for rare disease, and Modality NHS partnership, a rare disease diagnosis program. Together, these organizations…
Many people have questions about the COVID-19 vaccine, a number of them pertaining to the speed at which it was developed and approved. Rare disease patients are no exceptions. Barbra…
Eurordis The European Organization for Rare Diseases (Eurordis) is a nonprofit organization which organizes over 930 rare disease groups into one alliance. Groups have joined the network from 73 different countries.…
Looking for a feel-good story? Then look no further. In December, telecom company Cox worked to make a difference for the rare disease community. The organization headed its Elite Gamer…
Laura Bonnell’s two children have cystic fibrosis (CF). This condition affects the respiratory system and can severely impact patient’s immune system. She explains how she didn’t own a single N95…
The Neurological Alliance has released a report that details the experiences that rare, neurological disease patients in the UK share and calls for improvements for these people. Experts in the…
No deal Brexit means that the UK will be excluded from the 24 ERNs (European Reference Networks). Without the sharing of information, data, and research across countries, rare disease research…
The Rare Disease Legislative Advocates (RDLA) held a webinar on December 3rd, 2020. This event focused on the organization's goal of passing Cures 2.0, a bill that would help further…
There is a large stigma against those with disabilities. Many misunderstand the wide diversity in disability and the success that those who are disabled can have in their lives. This…
Before 1983, there were few treatments for rare diseases. Various obstacles stood in the way, including little representation for patients, few incentives, and a lack of resources. Fortunately, the Orphan…
With the overall focus of the Reuters Pharma & Patient USA 2020 conference being the relationship between patients and drug manufacturers, a key topic focused on how companies can form…
As of the end of August 2020, CENTOGENE has collaborated with more than 40 pharmaceutical partners to develop solutions for patients with rare diseases. In a press release from…
By Rachel Whetstone from In The Cloud Copy Food is fundamentally linked with celebrations in every culture around the world. Families gather for a feast at big holidays and birthdays…
The Reuters Pharma & Patient USA 2020 virtual conference included a number of shorter presentations that focused on specific approaches to help drug companies better meet the needs of patients.…
According to a story from Charcot-Marie-Tooth News, the National Organization for Rare Disorders (NORD) is beginning a new initiative that will be the focus of a public virtual meeting that…
Author: Harsha K Rajasimha, MS, Ph.D. Editor: Sharlene Brown, Ph.D. When clinical investigators and study coordinators start planning a new study design, speed and efficiency are paramount. Running a clinical…
From December 1-4, 2020, Reuters hosted a virtual conference called Pharma & Patient USA 2020. The primary focus of this event was furthering patient centricity in disease development as well…
The Orphan Drug Act originated in 1983 as an incentive for pharmaceutical companies who worked on developing treatments for rare disease. Since rare diseases are well, rare, choosing to work…
The Cambridge Rare Disease Network presents RARE Fest 2020 Engage.Educate.Empower. November 28, 2020 In light of the COVID-19 pandemic, RAREfest20 will be celebrated as a live virtual festival that will…
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