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Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

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Those who wish to acquire practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD), and this year 26-26 June 27th takes place.

The conference brings together patients, families, healthcare professionals and other supporters to learn, share and connect.

Due to the ongoing COVID-19 pandemic, general sessions, breakout workshops and networking will again be virtual. The sessions, which provide perspectives from patients, caregivers and the medical community, are broadcast live and recorded for later viewing. Throughout the forum, participants can visit the exhibition hall and meet with other participants.

Also this year the Rare Impact Awards return as part of the program. This June 28 presentation honors individuals, organizations and industry innovators for their exceptional work benefiting the rare disease community.

“The health and well-being of people with rare diseases, their relatives and those who work to improve their lives continue to have top priority for all of us here at NORD,” said the forum message.

“The COVID-19 pandemic has given us new ways to connect with our community, and our 2020 virtual program has been the most successful forum to date! In 2021 we will continue to work hard to keep our community healthy and safe while we participate in this effective program, ”said NORD.

Registration for the “patient-centered” event costs US $ 39 for patients, nurses, students and representatives of the NORD patient organization. The cost is $ 75 for professional lawyers, scientists, doctors, and government officials and $ 500 for members of the NORD corporate council. For pharmaceutical, insurance, or other agents, registration is $ 650.

On the agenda is the opening discussion on the subject of “Patient-Professional Partnership” and includes three stories about the close bond between patients and their caregivers.

Breakout sessions for Saturday, June 26th, include “Coping with Graef and Anticipatory Grief”, “Shared Decision-Making with Your Care Team” and “Working While Rare”, followed by “Involving in Clinical Research: Finding” and Preparing for Clinical Trials, ”“ Navigating Insurance, Social Security Disability, and Patient Aid Programs, ”and“ The ABCs of Advocating Your Child’s Education ”in the second group of workshops.

This is followed by a plenary discussion on the subject of “Building resilience in a time of the unknown”. Speakers will examine how patients have coped while waiting for a diagnosis, how they fare while waiting for new treatments, and how they kept it together during the pandemic.

June 27th begins with an opening discussion in the plenum entitled “The Rare Sibling Experience”. Here, three siblings of rare disease patients will share their experiences, including how they became advocates.

Breakout sessions that day include “Fight Back and Fight Forward by Advocacy”, “Palliative Care: Unmasking the Myths”, “Rarely in the Family: Navigating the Roles of Patient, Parent, and Caregiver” in the early discussion groups. Later offerings this Sunday will include “Aging with a Rare Disease”, “Finding Your Community and Building Your Support Network” and “The Intersection of Race, Ethnicity and Equality with Access to Diagnosis and Treatment”.

The concluding plenary discussion, entitled “Rare Breakthroughs Now and on the Horizon”, will look at the latest advances in the diagnosis, treatment and care of rare diseases.

At the beginning of the year, NORD called on people to report on their practical experiences with rare diseases at the conference. A total of around 55 speakers will attend the conference, including doctors, nurses and other health professionals. Access to the virtual program will be provided by email during the week of the event.

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How Law Enforcement Perpetuated My Son’s Trauma During a Mental Health Crisis

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If you or someone you know is experiencing a mental health, suicide or substance use crisis or emotional distress, reach out 24/7 to the 988 Suicide and Crisis Lifeline (formerly known as the National Suicide Prevention Lifeline) by dialing or texting 988 or using chat services at suicidepreventionlifeline.org to connect to a trained crisis counselor. You can also get crisis text support via the Crisis Text Line by texting NAMI to 741741.

There’s always more to the story. My son’s story began well before the fateful night of Dec. 5, 2017, but it was this night that changed everything.

My son, Tyler, found himself isolated, living in his car and feeling suicidal. After consuming lethal levels of alcohol and other drugs, he reached out to me for help, expressing his suicidal thoughts.

Even though I am a physician assistant who occasionally handles mental health and substance abuse cases, I was completely lost when it came to my son being the one who needed help. His texts and calls were ambiguous, and I was confused by what he was telling me. Was he really contemplating suicide? What’s this really happening?

After a terrifying incident, we reached out for help

I contacted my mother, who lived near Tyler, and thankfully, she was able to locate him and his vehicle. On the other end of the phone, I could hear her exhale with relief. She opened the back-passenger car door, saw that Tyler was incoherent and crying, with an open wound on his forehead and made the decision to call emergency services.

When the ambulance arrived, I asked to speak with the responders. I explained my level of experience and listed the psychiatric medications my son had recently taken. I also explained that I thought my son was having an uncharacteristic change in his mental status from a combination of his medication’s side effects and alcohol toxicity. I felt this could be contributing to his suicidal thoughts and behaviors — and asked that they provide that information to the attending physician or charge nurse in the emergency department.

They said they would, but I don’t believe they did.

My Son Was Treated Like a Criminal

When Tyler arrived at the hospital, disheveled and intoxicated, he was first treated as a disposable announcement for the evening. Unfortunately, I didn’t find this surprising; in many cases, even trained professionals simply don’t know how to de-escalate a situation of this nature, so they often treat individuals with substance use disorder like criminals. That said, having a mental illness or substance abuse disorder does not equate to committing a crime. And being suicidal, in my son’s case, was a mental health crisis, not an unlawful act or a moral failing.

When Tyler arrived at the medical center, he began begging the police officers to shoot him. He wanted to remove himself from the pain he couldn’t find a way to bear anymore. Tyler was put in restraints and given a sedative. After this, his ability to function with any control became impossible. The report states that, after waking up in a confused and scared state, realizing he had been tied down, Tyler started yelling and spitting. His medication-induced psychosis at that time was likely the reason, but there was no mention of this in the report.

I don’t excuse my son’s actions, but I also don’t have the full story — and I know, based on his grandmother’s first-hand account of the situation, that the officer was irritated about having to “handle” an “addict .” Even though Tyler was under the influence, de-escalation should have been the tactic in this case, not verbal escalation from trained professionals with a suicidal patient.

Some nurses later told me and my son that they expected difficult behavior in these situations and never take it personally. However, this officer did, and he charged my son with a felony.

My Son Was Transported to Jail Instead of a Psychiatric Facility

After my son’s psychiatric assessment, the social worker and board-certified physicians collectively determined that he needed immediate psychiatric care.

Over the phone, the social worker told my husband and I that the officer would certainly take Tyler to a mental health treatment facility — and I had no reason to believe there was anywhere else he could possibly go.

The next morning, after miraculously getting a flight into Texas, I assumed I would drive directly to the hospital to find my son there. Instead, I got a call from Tyler, who had been redirected to the county jail. He only had a minute to make his one call and inform me of his location.

What began as both a physical and psychiatric emergency had turned into an incarceration and a felony. My mother, who had been at the hospital, told me that the deputy assigned to transfer Tyler was quite unhappy that he had to deal with another “drunk” in the middle of the night. He disregarded the directive to take my son to the psychiatric hospital and instead drove him to jail. He placed a bag over my son’s head and left his hospital gown gaping in the front leaving his naked body exposed.

After arriving at the jail, my son sat on a bench for several hours in handcuffs, unable to cover himself and begged someone for some clothes. Eventually, he was put in a main cell with all the other unfortunate “criminals.”

As My Son’s Condition Worsened, So Did His Treatment

Within 24 hours, he would start the real process of withdrawal from alcohol. This is an incredibly dangerous experience — heart attacks, seizures and sudden death are all possibilities in alcohol withdrawal. And yet, at this critical point, my son was put into solitary confinement. He was held in a small cell with a urine and vomit-soaked mattress thrown on the floor near a gaping hole in the cement meant to be used as a toilet.

He yelled out to find out what time it was periodically because the bright, fluorescent lights were never turned off, but nobody would answer him. He asked for water, but he was left thirst. He was shaking uncontrollably in withdrawals, but it didn’t seem to matter. He was still suicidal, but that didn’t seem to be important to anyone.

When I arrived in Austin, I drove directly to the jail. Tyler walked out in a jail-issued jumpsuit, tears soaking his face. We sat down, looked at each other and bawled. I never thought I’d see my son in jail, but what was killing me in that moment was that just hours before, he had told me he wanted to end his life. I just kept thinking how scarring his experience must have been.

With The Right Help, My Son Found Healing

After several additional years of self-destructive behavior, my son is healthy, happy and in recovery. I’m grateful to be able to say that now. But this is only after our family discovered that Tyler had experienced severe trauma as a teenager and grappled with the compounding effects of trauma from his treatment that night in hospital. We have been able to get him extensive counseling and treatment, and he is in a much better place in his life.

But this happy conclusion could have been reached earlier. There is always more to the story — and I’ve always believed that if law enforcement or hospital staff had approached Tyler with empathy instead of annoyance, his healing could have begun sooner.

After our traumatizing incident with law enforcement, I reached out to NAMI. They were the very first organization to actually listen to my story and give me guidance, resources and real help for my son. I am eternally grateful for their contributions at the time when we needed them most. They were the only ones who took the time, showed compassion and listened to my story when I just needed so desperately to be heard.

Lisa M. Gennosa lives with her husband, and two pups in Tarboro, NC, where she is a practicing physician assistant. She is a dedicated wife and mother — and her son remains the greatest gift in her life. Her exposure to the health care system, the legal field and the challenges of parenting a son with substance use disorder has helped her to recognize that mental health issues are too often shrouded in secrecy. She has worked with police, slogan and correctional officers, paramedics, nurses and other hospital staff in an effort to create positive change. Her book, “Incurable Hope: A Memoir and Survival Guide for Coping with a Loved One’s Addiction” is scheduled for release in February 2023.

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Neglecting lung health increases respiratory diseases- The New Indian Express

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Express News Service

THIRUVANANTHAPURAM: The tendency to neglect the health of the lung has posed a health challenge as experts find that people take medications only when the disease has worsened. According to them, most patients carry on with their cough that refuses to quieten down for weeks or months, making the treatment complicated. Often, the cough is wrongly associated with other diseases even when the underlying cause is a life-threatening respiratory illness.

The undiagnosed lung disorders affect the quality of life and increase the mortality rate. The importance of lung health was evident during the Covid pandemic which resulted in a death toll of over 70,000 in the state. Experts associate most of Covid deaths to respiratory issues.

“A look at the respiratory diseases prevalent in our society will reveal the apathy we have in caring our respiratory system. Interstitial lung disease which causes progressive scarring of lung tissue has become more common nowadays. Still, people carry on with their dry cough and shortness of breath while exerting for months.

It is mostly detected when the lung is almost fully damaged. The same is the case with the cough associated with lung cancer, the top killer among cancers,” said Dr PS Shajahan, professor of Pulmonary Medicine at Government TD Medical College, Alappuzha, and president of Academy of Pulmonary and Critical Care Medicine.

The spectrum of respiratory disease ranges from acute illness, such as pneumonia or lower respiratory tract infection, to chronic diseases such as chronic obstructive pulmonary disease (COPD. The causes range from genetic to environmental factors or allergies to infections.

The experts in the field find that respiratory diseases have received less attention than other prominent non-communicable diseases such as cardiovascular disease, diabetes, or cancer. According to Dr Shajahan, the arrival of CT scan and other diagnostic tools has helped in finding more patients.With the attention shifting to Covid, tuberculosis (TB), a potentially serious infectious disease that kills just under 2,000 people in the state every year, cases have increased.

“Testing at healthcare facilities is conducted on symptomatic patients. However, there are a lot of people who are asymptomatic and also have TB. In the pursuit to eliminate the disease, it is critical to identify high-risk populations and carry out ‘active case finding’ drives to screen vulnerable communities and initiate timely treatment for those diagnosed with TB,” said Sriram Natrajan, director, CEO and founder , Molbio Diagnostics.

TB CASES SAW 5% INCREASE LAST YEAR

The number of TB cases reported showed a 5% increase in 2021 compared to the previous year. It is evident that the state could not meet the lofty target of TB elimination by 2025.

HOW DANGEROUS RESPIRATORY DISEASES ARE

Respiratory diseases comprised three of the top 10 causes of death and resulted in 80 lakh deaths worldwide in 2019: WHO

THIRUVANANTHAPURAM: The tendency to neglect the health of the lung has posed a health challenge as experts find that people take medications only when the disease has worsened. According to them, most patients carry on with their cough that refuses to quieten down for weeks or months, making the treatment complicated. Often, the cough is wrongly associated with other diseases even when the underlying cause is a life-threatening respiratory illness. The undiagnosed lung disorders affect the quality of life and increase the mortality rate. The importance of lung health was evident during the Covid pandemic which resulted in a death toll of over 70,000 in the state. Experts associate most of Covid deaths to respiratory issues. “A look at the respiratory diseases prevalent in our society will reveal the apathy we have in caring our respiratory system. Interstitial lung disease which causes progressive scarring of lung tissue has become more common nowadays. Still, people carry on with their dry cough and shortness of breath while exerting for months. It is mostly detected when the lung is almost fully damaged. The same is the case with the cough associated with lung cancer, the top killer among cancers,” said Dr PS Shajahan, professor of Pulmonary Medicine at Government TD Medical College, Alappuzha, and president of Academy of Pulmonary and Critical Care Medicine. The spectrum of respiratory disease ranges from acute illness, such as pneumonia or lower respiratory tract infection, to chronic diseases such as chronic obstructive pulmonary disease (COPD. The causes range from genetic to environmental factors or allergies to infections. The experts in the field find that respiratory diseases have received less attention than other prominent non-communicable diseases such as cardiovascular disease, diabetes, or cancer.According to Dr Shajahan, the arrival of CT scan and other diagnostic tools has helped in finding more patients.With the attention shifting to Covid, tuberculosis (TB), a potentially serious infectious disease that kills just under 2,000 people in the state every year, cases have increased.”Testing at healthcare facilities is conducted on symptomatic patients. However, there are a lot of people who are asymptomatic and also have TB. In the pursuit to eliminate the disease, it is critical to identify high-risk populations and carry o ut ‘active case finding’ drives to screen vulnerable communities and initiate timely treatment for those diagnosed with TB,” said Sriram Natrajan, director, CEO and founder, Molbio Diagnostics. TB CASES SAW 5% INCREASE LAST YEAR The number of TB cases reported showed a 5% increase in 2021 compared to the previous year. It is evident that the state could not meet the lofty target of TB elimination by 2025. HOW DANGEROUS RESPIRATORY DISEASES ARE Respiratory diseases comprised three of the top 10 causes of death and resulted in 80 lakh deaths worldwide in 2019: WHO

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C-Path secures FDA Grant for new public-private partnership to benefit people with rare neurodegenerative diseases

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Critical Path Institute (C-Path) has announced it will serve as the convener of the Critical Path for Rare Neurodegenerative Diseases (CP-RND), a new public-private partnership (PPP) to benefit people across multiple rare neurodegenerative diseases, supported by a grant from the US Food and Drug Administration (FDA). The Agency announced the PPP today in a press release.

These innovative and collaborative approaches are needed to accelerate medical product development for the benefit of individuals living with these rare diseases, and their families. I am thrilled about this partnership that will strengthen collaborations between C-Path, FDA and NIH, and bring together a diverse group of stakeholders.”

Wainwright Fishburn, C-Path Board Chair

C-Path’s proven proficiencies will be leveraged to ensure the success of this effort, specifically the organization’s track record in generating tangible solutions that have accelerated drug development in numerous diseases. This, together with the capabilities of its Rare Disease Cures Accelerator-Data and Analytics Platform(RDCA-DAP ®) to integrate multiple patient-level data sources across rare diseases, will provide the foundation for leveraging advances in basic and clinical sciences, supported by NIH, and innovative regulatory science, supported by FDA.

In June, the FDA unveiled its Action Plan for Rare Neurodegenerative Diseases including Amyotrophic Lateral Sclerosis (ALS) -; a five-year strategy for improving and extending the lives of people with rare neurodegenerative diseases, including ALS, by advancing the development of safe and effective medical products and facilitating patient access to novel treatments. The plan was developed in accordance with the provisions of the Accelerating Access to Critical Therapies for ALS Act, including the requirement to establish a public-private partnership this fiscal year.

“It is an honor for C-Path to be part of this transformative partnership with FDA and NIH. CP-RND will leverage all five of C-Path’s core competencies -; data management and standards, quantitative analytics and modeling, biomarkers, clinical outcome assessments and regulatory science -; as well as C-Path’s concentration areas from its neuroscience/neurology, pediatrics, and rare disease programs,” explained Klaus Romero, MD, MS, FCP, C-Path’s Chief Science Officer and Executive Director of Clinical Pharmacology . “This partnership with FDA and NIH will positively transform medical product development and make CP-RND a template for comprehensive and meaningful collaborative science.”

As with previous PPPs at C-Path, CP-RND will provide a neutral environment for pre-competitive collaboration including, but not limited to industry, patients, advocacy groups, academia, non-profit organizations, and others, to come together and actively contribute to advance promising solutions for the benefit of these communities. To learn more about C-Path’s CP-RND, visit https://c-path.org/programs/cp-rnd and contact the team at [email protected]

sources:

Critical Path Institute (C-Path)

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