Provides information on raising heathy children for parents with children ages 1 - 11 yeard old.

Original title: “Young Children: Raising Healthy Children”

Finding the right clinical trial takes time, but caregivers can make participation possible through coordination and ongoing support. For those traveling longer distances, certain trials may cover airfare, lodging and meals, particularly in later-phase or rare-disease studies where participants are geographically dispersed. · “There’s an effort to balance the time burden on patients and caregivers with some reimbursement, but it’s not meant to replace lost wages or serve as a financial incentive,” says Dr. Page B. Pennell, chair of neurology at the University of Pittsburgh School of Medicine. The practical realities of work and caregiving responsibilities can make clinical trial participation difficult without built-in flexibility. They turned to clinical trials not only as a chance to slow the disease, but as a way to reclaim hope and help shape a better future for families like theirs. Julie, also living with epilepsy and a family history of stroke and heart disease, enrolled in a study with an oral drug, preferring a pill over infusion-based treatments. Lisa Lancaster, who has led several lung disease studies through Vanderbilt University Medical Center in Nashville.​ · “Understanding the study’s goals, prior safety and efficacy results, and how the treatment is expected to work is considered essential before making a decision to participate,” Lancaster adds. Consent documents often contain critical logistical information, such as the number of required visits, whether the therapy is  taken orally or by infusion, and any expectations for monitoring or symptom-tracking diaries, commonly used by caregivers in Alzheimer’s and dementia studies to track changes in their loved one's behavior over time. ​Online resources are increasingly providing information about clinical trials and help individuals and families identify appropriate options. Caregivers are essential to coordinating logistics and supporting treatment adherence and strengthening day-to-day participation. Many trials offer travel reimbursement, flexible scheduling and remote visits to help make trial participation more practical.​ · After watching Alzheimer’s disease steal the memories and independence of several of her relatives, Julie and Ron Moore of Irvine, California, knew the diagnosis they feared might one day arrive.

Original title: “What Caregivers Need to Know About Clinical Trials”

Finding the right clinical trial takes time, but caregivers can make participation possible through coordination and ongoing support. For those traveling longer distances, certain trials may cover airfare, lodging and meals, particularly in later-phase or rare-disease studies where participants are geographically dispersed. · “There’s an effort to balance the time burden on patients and caregivers with some reimbursement, but it’s not meant to replace lost wages or serve as a financial incentive,” says Dr. Page B. Pennell, chair of neurology at the University of Pittsburgh School of Medicine. The practical realities of work and caregiving responsibilities can make clinical trial participation difficult without built-in flexibility. They turned to clinical trials not only as a chance to slow the disease, but as a way to reclaim hope and help shape a better future for families like theirs. Julie, also living with epilepsy and a family history of stroke and heart disease, enrolled in a study with an oral drug, preferring a pill over infusion-based treatments. Lisa Lancaster, who has led several lung disease studies through Vanderbilt University Medical Center in Nashville.​ · “Understanding the study’s goals, prior safety and efficacy results, and how the treatment is expected to work is considered essential before making a decision to participate,” Lancaster adds. Consent documents often contain critical logistical information, such as the number of required visits, whether the therapy is  taken orally or by infusion, and any expectations for monitoring or symptom-tracking diaries, commonly used by caregivers in Alzheimer’s and dementia studies to track changes in their loved one's behavior over time. ​Online resources are increasingly providing information about clinical trials and help individuals and families identify appropriate options. Caregivers are essential to coordinating logistics and supporting treatment adherence and strengthening day-to-day participation. Many trials offer travel reimbursement, flexible scheduling and remote visits to help make trial participation more practical.​ · After watching Alzheimer’s disease steal the memories and independence of several of her relatives, Julie and Ron Moore of Irvine, California, knew the diagnosis they feared might one day arrive.

Original title: “What Caregivers Need to Know About Clinical Trials”

Over one-third of BioSpace LinkedIn poll respondents have done free work while interviewing for jobs. A recruiting expert and career coach discuss why employers make work requests and how biopharma professionals should evaluate and respond to them.

Original title: “Show, don’t tell: doing free work during the interview process”

Staff at Salt Lake City-based techbio company Recursion recently heard from Jenny and Tim Jones about their challenging family history of familial adenomatous polyposis.

Original title: “Patient advocate offers Recursion a powerful reason to keep going in rare disease”

A partnership between an Atlanta company that connects doctors and patients with rare diseases to clinical trials could improve how patients are identified and referred. Patients living with diseases often face obstacles, including eligibility and limited access to studies and trials. But a new partnership between health tech company myTomorrows and Rare Disease Research, an independent U.S. clinical research site network, is focused exclusively on rare disease studies. An online platform is available to help physicians check the eligibility of their patients specifically for trials available in Georgia. Tags: Georgia health rare diseases research Atlanta clinical trial GPB News LISTEN: Atlanta-based Rare Disease Research is working with biotech company myTomorrows, based in the Netherlands, to connect doctors and patients with rare diseases to clinical trials. 80% of rare diseases are genetic. That's why whole genome sequencing can help with diagnoses · Finding clinical trials and accessing options for all patients is difficult and extremely time-consuming for physicians, said Mar Soto Ruiz de la Torres, the commercial strategy and operations lead at myTomorrows.

Original title: “New partnership Atlanta means better connection between rare diseases, clinical trials and patients | Georgia Public Broadcasting”

The Denise D’Ascenzo Foundation Walk to Fight Rare Diseases returns to Quinnipiac University Saturday morning, with organizers expecting more than 300 people and over $100,000 raised. (WFSB) - The Denise D’Ascenzo Foundation Walk to Fight Rare Diseases returns to Quinnipiac University Saturday morning, with organizers expecting more than 300 people and over $100,000 raised. The walk begins at 10 a.m. The one- to two-mile route supports rare disease research and the families fighting these battles every day. The Denise D'Ascenzo Walk to Fight Rare Diseases was scheduled for Saturday, April 26, 2026, at 10 a.m. on the campus of Quinnipiac University in Hamden.(The Denise D'Ascenzo Foundation)

Original title: “Denise D’Ascenzo Foundation Walk aims to raise $100K for rare disease research”

A dynamic research foundation in Greater London is seeking a highly skilled Research Programme Manager to oversee its global research portfolio. The role involv A dynamic research foundation in Greater London is seeking a highly skilled Research Programme Manager to oversee its global research portfolio. The role involves managing research projects while connecting scientific discoveries to therapeutic applications in collaboration with global experts. Ideal for those who want to impact the rare disease community.

Original title: “Global Translational Research Lead - Rare Disease - Citrin Foundation | BeBee”

Our event at the European Parliament with MEP Nicolás González Casares emphasised the need for a patient-driven approach to EU rare disease policy decisions. The post Joint call in Parliament to accelerate an EU-wide Rare Disease Action Plan appeared first on EURORDIS-Rare Diseases Europe.

Original title: “Joint call in Parliament to accelerate an EU-wide Rare Disease Action Plan”

In this episode of Denatured, you'll be hearing from Dr. Sarah Howell, CEO at Arecor Therapeutics and Dr. Wendy S. Lane, clinical endocrinologist and diabetologist. We examine how increasingly connected and tailored diabetes technologies are reframing the field’s central opportunity around minimizing the day-to-day demands of managing the condition.

Original title: “The next era of diabetes management”

Women and nonwhite racial/ethnic groups are still earning less in the life sciences. An industry consultant discusses the pay disparities, ways to fix the gaps and why change is needed.

Original title: “Life sciences still falls short on pay equity”

While life sciences employment was down 0.3% nationally in 2024, it rose 1.9% in Washington, according to a new Life Science Washington report. The association’s CEO discusses the latest findings and how the state’s job market looks this year.

Original title: “Washington’s life sciences jobs continue increasing, up 50% from 2014-2024: report”

While Novo Nordisk’s Wegovy pill reached more than 3,000 patients in its first week on the market, analysts at RBC Capital Markets said a direct comparison of the two figures could be misleading given the shorter data collection time for Foundayo.

Original title: “Lilly’s Foundayo reaches 1,390 patients in first week, trailing Novo’s oral Wegovy launch”

The pharma industry “own Congress, they own the media,” Health Secretary Robert F. Kennedy, Jr. told lawmakers by way of explaining the bad press against FDA Commissioner Marty Makary following the second rejection of Replimune’s advanced melanoma drug.

Original title: “RFK Jr. defends Makary, claims pharma ‘owns’ Congress and media”

We explore how our ECRD 2026 programme will address the topic of getting more and better medicines to patients. The post Breaking the bottlenecks: How a more globally competitive Europe should get more and better treatments to patients appeared first on EURORDIS-Rare Diseases Europe.

Original title: “Breaking the bottlenecks: How a more globally competitive Europe should get more and better treatments to patients”

medics for rare disease advocating for rare disease training

Original title: “Medics for Rare Disease: advocating for rare disease training.”