The American Society for Preventive Cardiology (ASPC) announces the official program for the ASPC 2022 Congress on CVD Prevention, scheduled July 29-31, 2022 in Louisville, KY. The program covers the “

 over the 2.5 day live, in-person program, and can be found on 

Included in the 2022 program are a variety of distinguished award lectures including the notable Honorary Fellowship Award and Lecture, honoring 

, for her incredible contributions to the field of preventive cardiology. Dr. Douglas will be presenting her lecture entitled “Strengthening CV Prevention for the Future: Beyond the ABCs” on Friday, July 29th during the opening session of the 2022 Congress.

Dr. Douglas is the Ursula Geller Professor of Research in Cardiovascular Diseases in the Department of Medicine at Duke University. She has led several landmark multicenter randomized clinical trials and outcomes research studies and is renowned for her scientific and policy work in improving the quality and appropriateness of imaging in clinical care, clinical trials, and registries. Dr Douglas helped to establish several important specialty areas including heart disease in women, sports cardiology, and cardio-oncology.

 will be honored with the Pioneer in Prevention Award on Saturday, July 30th, presenting a lecture on “National Cholesterol Guidelines: 1987-2018”

The Pioneer in Prevention Award (previously named Leaders in Medicine) is bestowed on individuals who have profoundly impacted cardiovascular disease prevention by taking the field in a whole new direction.

 will be honored with the Nanette Wenger Award presenting a lecture on “Open Artery Ischemia: An Unrecognized Opportunity for Prevention?”. Dr. Pepine is a Professor and Chief of Cardiovascular Medicine at the University of Florida College of Medicine.

 will be honored with the Joseph Stokes III, MD Award, presenting “Personalization of Individual Prevention Strategies for Hypertension - Applying ‘-omics’”. Dr. Arnett is Dean of the University of Kentucky College of Public Health and a Professor in the Department of Epidemiology.

The ASPC encourages all to join the world-renowned faculty presenting across the spectrum of preventive cardiology at #ASPC2022 including lectures on cholesterol management for primary CVD prevention, tobacco cessation, barriers associated with the treatment of diabetes, treating obesity as a CV risk factor, open artery ischemia, the role of stress management on CVD, the cardio-renal-metabolic intersection, and an exciting debate about aspirin’s role in primary prevention.

Attendees of the 2022 Congress will earn approximately 15 CE/MOC/AAPA credits.

About the American Society for Preventive Cardiology (ASPC)

The ASPC is a national organization of healthcare providers and researchers dedicated to the prevention of cardiovascular disease. The mission of the ASPC is to promote the prevention of atherosclerotic cardiovascular disease, advocate for the prevention of cardiovascular health, and disseminate high-quality, evidence-based information through education of clinicians.

Articles

ASPC Announces Official Program Covering the ABCs of Preventive Cardiology at Premier Annual Congress on CVD Prevention

Arizona Governor Douglas Ducey signed SB1469 info law requiring law enforcement and criminal justice agencies to provide a valid search warrant in order to access Controlled Substances Prescription Monitoring Program (CSPMP) data from the State Board of Pharmacy (Board). This law will go into effect 90 days after the end of the Fifty-Fifth Legislature, Second Regular Session wraps up.

The SB1469 was sponsored by Senator Nancy Barto and passed unanimously in both the Arizona House and Senate. There were more than 40 groups, providers and individuals signed on in support of the bill’s passage. There was a wide range of support for the bill coming from medication providers, patients, and nonprofits. The Republican Liberty Caucus of Arizona, Arizona Chronic Care Together Coalition, Arizona Psychiatric Society, Republican Liberty Caucus of Arizona, and ACLU of Arizona were helpful in their support of the bill passage. Marilyn Rodriquez of ACLU of Arizona, Dr. Jeffrey Singer of Cato Institute, and Barby Ingle pain patient & President of International Pain Foundation gave testimony, on the importance of the passage of this bill for the Arizona community.

Dr. Jeffrey Singer of the Cato Institute remained neutral on the bill during testimony, adding after the recent passage, “Law enforcement should not be able to go on a fishing expedition through patients' medical records without a warrant signed by a judge showing there is probable cause of a crime.” The state prescription monitoring program (CSPMP) is operated, monitored and maintained by the Board and includes a computerized central database tracking system to track the prescribing, dispensing and consumption of schedule II, III, IV and V controlled substances that are dispensed by a licensed or permitted medical practitioner or pharmacy.

In compliance with A.R.S. § 36-2602, the CSPMP is used to assist law enforcement to identify illegal activity related to prescribing, dispensing and consuming schedule II, III, IV and V controlled substances and provides information to patients, medical practitioners and pharmacists to help avoid the inappropriate use of such substances. The database must include data from the Department of Health Services that identifies Arizona residents who possess a registry identification card and must not interfere with the legal use of a controlled substance for managing severe or intractable pain.

The current statute (A.R.S. § 36-2604) allows the Board to release CSPMP data to a local, state or federal law enforcement or criminal justice agency upon Board suspicion of illegal conduct, or if the agency provides in writing that access to the data is necessary as part of an open investigation or complaint.

Singer said, “This new law will restore Fourth Amendment rights and due process, and will hopefully allay many doctors' fears that they risk arrest for adequately treating their patients' pain.”

The new previsions will limit the Board's ability to release CSPMP data to a law enforcement or criminal justice agencies to only circumstances in which the agency has a valid search warrant and is using the information for an open investigation or complaint. The new law allows an investigator to refer a prescriber to the applicable professional licensing board for investigation if, after reviewing CSPMP data, the investigator finds no evidence of a statutory crime but suspects the prescriber is inappropriately prescribing controlled substances in manner or amount. It prohibits the investigator from undertaking criminal proceedings or pursuing the arrest of a prescriber based on suspicion of inappropriately prescribing controlled substances. This bill also removes the requirement that the Board provide evidence of unprofessional conduct of a Physician, upon review of CSPMP data, to a law enforcement or criminal justice agency. The bill allows an investigator to refer a prescriber to the applicable professional licensing board for investigation if, after reviewing CSPMP data, the investigator finds no evidence of a statutory crime but suspects the prescriber is inappropriately prescribing controlled substances in manner or amount. Finally, the bill prohibits the investigator from undertaking criminal proceedings or pursuing the arrest of a prescriber based on suspicion of inappropriately prescribing controlled substances.

Signing Of Arizona SB1469 on Controlled Substances Monitoring Search Warrants, into Law by Governor Douglas Ducey

Foundation for Sarcoidosis Research (FSR) announces the launch of the FSR Global Sarcoidosis Clinic Alliance, a groundbreaking initiative that will have a worldwide impact on advancing sarcoidosis research and improving the lives of those with sarcoidosis through patient and clinician education, engagement, and support.

The FSR Global Sarcoidosis Clinic Alliance brings together sarcoidosis clinics and hospitals committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis. Alliance members will benefit from innovative resources, sustainable programming, and tools to accelerate treatment, research, and the continuum of patient care.

“FSR believes in the power of many to join forces for true game-changing results in sarcoidosis care and research. The FSR Global Sarcoidosis Clinic Alliance will ensure every patient in every community across the world has access to education, care, and support, leading to improved patient outcomes,” says Mary McGowan, FSR CEO. “We are honored to already be collaborating with 22 esteemed founding members of this groundbreaking rare disease initiative which will lead to extraordinary results. The quality of life of approximately 1.2 million sarcoidosis patients impacted by sarcoidosis world-wide depends on a true global collaborative and that’s exactly what this Alliance is all about.”

Diane Driscoll, FSR Global Head of Clinical Engagement, notes, “We are continuing to seek founding members through September 30, and we invite all sarcoidosis clinics to learn more by registering for the webinar on July 21, 2022, at9:00am ET.” To register, visit 

As part of FSR’s grant through the Rare As One program, provided by the Chan Zuckerberg Initiative, the FSR Global Sarcoidosis Clinic Alliance membership will be provided to a select number of clinics that serve a high percentage of underserved communities. “We remain committed to improving the health and quality of life of people living with sarcoidosis in underserved communities,” says McGowan.

FSR Global Sarcoidosis Clinic Alliance Founding Members to date: Beaumont Health’s Royal Oak Interstitial Lung Disease Program, Cleveland Clinic Sarcoidosis Center of Excellence, The Emory Clinic, Inova Health System’s Advanced Lung Disease Services, Johns Hopkins Sarcoidosis Clinic, The Jane and Leonard Korman Respiratory Institute Sarcoidosis Program at Thomas Jefferson University, The Susan Pearlstine Sarcoidosis Center of Excellence at the Medical University of South Carolina, Mount Sinai Medical Center, National Jewish Health, Spectrum Health Sarcoidosis Clinic, Stanford Medicine, Tampa General Hospital/University of South Florida, University of Alabama at Birmingham Multidisciplinary Sarcoidosis Center of Excellence, UCLA State of the Art Sarcoidosis Clinic, University of Florida College of Medicine Jacksonville, UI Health Bernie Mac Sarcoidosis Translational Advanced Research Center (STAR), University of Kentucky Sarcoidosis Clinic, University of Mississippi Medical Center, Sarcoidosis Center of Excellence at the University of Texas Southwestern Medical Center, UT Health Houston/Memorial Hermann, University of Virginia, VCU Multidisciplinary Sarcoidosis Clinic. Mount-Sinai-National Jewish Health and Jane and Leonard Korman Respiratory Institute-Jefferson Health-National Jewish Health Partnership.

Foundation for Sarcoidosis Research Launches Groundbreaking Global Rare Disease Initiative

HANOVER, Md.—The Sickle Cell Disease Association of America named Reginald Hart Jr. as chief financial officer. Hart brings more than 20 years of experience in executive leadership, business management, strategic planning, financial operations, contracting and cost control.

Prior to joining the Sickle Cell Disease Association of America, Hart managed business finance and operations for AARP’s Legal Counsel for the Elderly, where he handled strategic and transactional financial responsibilities including the development of the annual budget, quarterly forecasts and multiyear financial plans. Hart also helped develop and implement the organization’s strategic plan.

Previously, Hart was CFO of the National Association of Housing and Redevelopment Officials. Hart oversaw all finance and accounting operations, leading a team of accounting, operations, conference planning, policy and human resources professionals. He also held the position of budget director for the association.

In addition, Hart held financial management positions with Tonya Management and Technology Consulting, including manager of contracts and finance, senior budget analyst and contract administrator. He has provided business consulting in organizational development, project management, financial systems analysis, design and implementation and contract management.

Hart belongs to the American Society of Association Executives and serves as a board member and mentor at the YMCA. He holds an MBA from the University of Maryland Global Campus and a bachelor’s degree in economics from the University of the District of Columbia.

 is an inherited blood disease causing red blood cells to take a sickle shape, which leads to blockages that prevent blood from reaching parts of the body. As a result, people with sickle cell complications can experience anemia, jaundice, gallstones, stroke, chronic pain, organ damage and premature death. No universal cure exists. (

Sickle Cell Disease Association of America

 advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 50 member organizations support sickle cell research, public and professional health education and patient and community services. (

Sickle Cell Disease Association of America Names Chief Financial Officer

HANOVER, Md.—The Sickle Cell Disease Association of America will hold the ninth annual Walk with the Stars fundraiser, where participating teams and individuals can track their time spent walking, running, dancing or moving while raising funds to support the association in preventing the complications of sickle cell disease through awareness, education, advocacy and research.

Walk with the Stars will kick off on World Sickle Cell Day June 19 and culminate in a virtual Walk with the Stars celebration on July 30 recognizing participants’ steps and success. To mark the association’s 50th anniversary, a “50 Hours for 50 Years” challenge will encourage participants to spend 50 hours active during the course of the fundraiser.

“We’re coming together on World Sickle Cell Day—friends, family, co-workers, people with sickle cell disease and their loved ones, everyone—to Walk with the Stars and support a universal cure,” said Regina Hartfield, president and CEO of the association. “The fundraiser will get us walking, running, dancing, biking and moving to benefit participants and contribute to our ultimate goal of breaking the sickle cycle.”

The Sickle Cell Disease Association of America has raised a total of over $500,000 through Walk with the Stars to support better treatments and improvements in the quality of health for individuals, families and communities affected by sickle cell disease.

To learn more and register for Walk with the Stars, visit 

. Sponsorships are available by emailing 

Walk With the Stars to Support Sickle Cell Disease Association of America

HANOVER, Md.—The Sickle Cell Disease Association of America and Sickle Cell in Focus requested research abstract submissions by June 30 for the annual sickle cell disease convention this fall. Abstract topics include implementing the National Academies of Sciences, Engineering and Medicine 2020 Report: Sickle Cell Blueprint for Action, community-based, basic and translational research and clinical and psychosocial research about sickle cell disease and sickle cell trait.

Held virtually Oct. 11 to 15, the convention “Joining Forces for Our Future” will foster the exchange of the latest scientific and clinical information about sickle cell disease through symposia, training seminars, panel discussions and activities designed to educate, motivate and mobilize the sickle cell community.

The convention will be held jointly by the Sickle Cell Disease Association of America and Sickle Cell in Focus, a conference co-hosted by the National Heart, Lung, and Blood Institute and the University of West Indies.

Abstracts must include a list of authors, research objectives, methods, results and conclusions and cannot exceed 1,000 words. If selected, authors must record a five-minute video and create a static poster to be judged during the virtual convention. To learn more and submit an abstract, visit 

 is an inherited blood disease causing red blood cells to take a sickle shape, which leads to blockages that prevent blood from reaching parts of the body. As a result, people with sickle cell complications can experience anemia, jaundice, gallstones, stroke, chronic pain, organ damage, and premature death. No universal cure exists. (

 advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 50 member organizations support sickle cell research, public and professional health education, and patient and community services. (

Sickle Cell Disease Research Abstracts Requested for Annual Convention

® and the Consortium of Multiple Sclerosis Centers (

) today announced the inaugural class of Giants of Multiple Sclerosis™ inductees.

 is a premier neuroscience award that celebrates pioneers, innovators and future generations of leaders selected by their peers for their remarkable achievements in multiple sclerosis.

, took place on Thursday, June 2, 2022, during the CMSC Annual Meeting at the Gaylord National Resort & Convention Center in National Harbor, Md.

 program recognizes individuals who have reached landmark successes within the field of multiple sclerosis. Out of many nominations, the steering committed selected only nine multiple sclerosis health care professionals to join the prestigious 2022 inaugural class.

 steering committee is a group of health care professionals – all giants in their own right – who came together to provide guidance to 

® on the development of this new recognition initiative. The steering committee selects the finalists and, ultimately, the inductees in each category from the nominations submitted late last year.

“We’d like to congratulate each and every single member of this year’s class of inductees on this enormous honor,” said Mike Hennessy Jr., president and CEO of MJH Life Sciences™, the parent company of 

. “It is no surprise that these health care professionals were recognized for their contributions to multiple sclerosis and dedication to this vital practice. They are all pioneers and leaders within the multiple sclerosis community.”

The 2022 honorees by award category are as follows:

Global Impact: Victor M. Rivera, MD, FAAN - Baylor College of Medicine

Mental Health: Frederick W. Foley, PhD - Yeshiva University/Holy Name Medical Center

Neuroimaging: David Li, MD, FRCPC - University of British Columbia

Neurology: T. Jock Murray, OC, ONS, MD, FAAN, MACP, FACPC, FRCP, FCAHS - Dalhousie University MS Research Unit

Nursing: Valerie Stickel-Diehl, RN, MS, MSCN - Ruan Neurology at MercyOne Hospital

Patient Care: Ellen S. Lathi, MD - The Elliot Lewis Center for Multiple Sclerosis Care

Pharmacy: Nancy Ross, PharmD, BCACP, MSCS, CSP - The Multiple Sclerosis Center of Atlanta

Research: Peter A. Calabresi, MD - Johns Hopkins University School of Medicine

Rehabilitation: Kathleen Brandfass, MS, PT - UPMC/Centers for Rehab Services


® and CMSC also honored two individuals for their contributions:

The Giants of Multiple Sclerosis™ Legacy Award: The late Susan E. Bennett, PT, DPT, EdD, NCS, MSCS - Bennett Rehabilitation Institute/University at Buffalo/D’Youville University; accepted by Lacey E. Bromley, PT, DPT, PhD, NCS, on behalf of Dr. Bennett

The Giants of Multiple Sclerosis™ Visionary Award: June Halper, MSN, APN-C, MSCN, FAAN - The Consortium of Multiple Sclerosis Centers

® delivers direct access to practice-changing news and expert insights directly from top medical conferences and researchers to improve the lives of patients with neurological diseases such as dementia, epilepsy, headache and migraine, movement disorders, multiple sclerosis, neuromuscular diseases, stroke and more. The 

® platform offers an in-depth look at the hundreds of new treatments in development with ever-expanding mechanisms of action, all during an unprecedented time of growing demand for neurology expertise.

® platform also connects visitors with the most up-to-date clinical trial results, Food and Drug Administration approvals, practice-changing research and expert insights. 

™, the largest privately held, independent, full-service medical media company in North America, dedicated to delivering trusted health care news across multiple channels.

™ is a premier neuroscience award program that celebrates pioneers, innovators and future generations of leaders who have been selected by their peers for their remarkable achievements in multiple sclerosis. Started in 2021, the program was established to recognize those participating in the care of patients with MS who often go unrecognized across several disciplines.

NeurologyLive® Announces Giants of Multiple Sclerosis™ Inaugural Class of Inductees

- Sessions will feature innovations in treatment of children’s skin disorders - 

 will bring the nation’s top pediatric dermatologists together for its 47th Annual Meeting. Taking place in Indianapolis, IN from July 7-10, 2022, the in-person three-day event will feature cutting-edge presentations, workshops and groundbreaking research from expert physicians working exclusively to treat children’s hair, skin and nail disorders, with a focus on dermatologic advancements.

Skin Picking and Other Habitual Disorders

Acne: Therapeutics Updates and Our Most Challenging Cases

Allergy: Benadryl Is Obsolete and Other Pet Peeves

Featured speakers include renowned pediatric dermatologists and leading practitioners in the field of children’s health:

 National Institute of Arthritis and Musculoskeletal and Skin Diseases

 Washington University School of Medicine

 Ann and Robert H. Lurie Children's Hospital of Chicago

Westin Indianapolis
241 West Washington St.
Indianapolis, IN 46204

Media wishing to attend in-person can RSVP to 

 by Tuesday, June 28 (6/28) at Noon ET as spots are limited.

https://pedsderm.net/meetings/annual-meeting/

About the Society for Pediatric Dermatology

 (SPD) is the only national organization in the U.S. specifically dedicated to the field of pediatric dermatology. A growing specialty in the world of children's health, SPD seeks to promote skin health across the U.S. and develop new treatments for pediatric patients. SPD publishes

 an academic journal which shares research on various aspects of pediatric care. New research studies are also regularly released through SPD's research arm, the 

 (PeDRA). SPD was founded in 1975 and currently has over 1,500 members worldwide, with backgrounds in a variety of areas including hereditary skin disease, pediatric skin cancer, laser and surgical treatments, and general pediatric dermatology. Follow SPD on 

Leading Pediatric Dermatologists Assemble for 47th Annual Meeting in Indianapolis July 7-10, 2022 

Governor Doug Ducey Signs SB 1162 Into Law Helping Arizonans With Chronic Intractable Pain Get The Treatment They Need

SB1162 will improve access to care for chronic intractable pain patients giving Arizonians living with a chronic intractable condition better access to health care treatment needs.


Senator Nancy Barto introduced SB1162 in January 2022. This new law will give protections for chronic intractable pain patients in Arizona. This amendment to ARS Section 32-3248.01, will improve access to care, give physicians the ability to treat their patients as medically appropriate, and confirm that providers and their state governing boards have oversight on the proper treatment for these patients. Pain patients and medical providers testified for 2.5 hours on the importance of this bill passing in the Senate Health Committee and another hour in the House Health Committee.
The Arizona Amendment to Section 32-3248.01, Arizona Revised Statutes; Relating to Controlled Substances defines chronic intractable pain and gives providers and patients with this health challenge an exemption from ARS Section 32-3248.01 medication prescribing laws that came about after the 2016 CDC guidelines were released. Medical providers, pain patients, and caregivers have supported this needed legislation. Knowing its success will help give medical providers proper authority to provide appropriate and timely care to patients. These patients need reasonable pain care outside of the average patient range with it comes to care with pain medication treatment options. We believe that this act will help patients in need achieve proper care and treatment and lower the number of suicides in the chronic intractable pain community due to the lack of appropriate care that the original law prohibited for each of them.


The program is essential for chronic intractable pain patients and all medical providers in Arizona. More than 150 providers, patients, caregivers, families, and organizations signed on to support this vital legislation. Many organizations, practicing physicians, pain patients, and caregivers have come together to help pass this Arizona Amendment to Section 32-3248.01, Arizona Revised Statutes; Relating to Controlled Substances and stand with the people of Arizona.


Dr. Jeff Singer, a Phoenix surgeon and senior fellow at the Cato Institute, said, “Just as it is unwise and dangerous to set in stone with the legal statute the proper dose and amount of insulin to treat diabetes or beta-blockers to treat high blood pressure, it is equally wrong to legislate the treatment of pain. If there is anything these past two years of the pandemic should have taught us, science is a work in progress, with what we know subject to continuous revision, and people are individuals - there is no one-size-fits-all solution to most health problems. Doctors’ opinions may vary on how to treat particular medical issues. Their professional differences should not be a concern of law enforcement.”
“This bill represents the promise of American democracy, a democracy that is of, by, and for the people,” said Barby Ingle BSc Psyc, President of International Pain Foundation and AZ pain patient. “Pain patients depend on access to proper treatment options, and the revisions to Arizona Amendment to Section 32-3248.01, Arizona Revised Statutes; Relating to Controlled Substances will be a tool to help patients get the access they need, strengthen the pain community, and our medical providers, and give our families and our communities a tool we need.”
Lauri Nickel spoke of her complex regional pain syndrome, unusual sensitivity to all kinds of touch, which can develop after injuries.
“For far too long, people with painful illnesses & conditions have been suffering due to poorly executed policies to address drug misuse. This legislation is the 1st step to help correct course and ensure the health and safety of all citizens to receive the individualized care they need without undue barriers and discrimination.”, said Lauren Deluca, Executive Director & Founding President, Chronic Illness Advocacy & Awareness Group, Inc.
Cindy Hock, a pain patient, told lawmakers of a series of problems after a botched hip replacement. That led to various complications, which causes pain throughout the body, and high blood pressure. “My blood pressure can be controlled when my pain is controlled,” she told lawmakers. However, Hock said she has been unable to get the dosages she needs since Arizona adopted the 2018 law.


"Thank God, Senator Barto heard our need for help and for Barby Ingle helping us learn the process. To everyone who emailed & testified - my Chronic Pain Community - there is Hope again for treatment. I was left abandon, but now may find a Doctor again. This is huge”, said Glorena Coffman.
“Though I don’t require opioids today, if I were to have the same botched surgery today, no one would prescribe the pain relief necessary for me to execute the laborious physical therapy that I needed. With this bill being signed into law, I may get the medication when needed. Thank you.” said Angie Goodgame.


In Arizona, we must deliver on the promise of helping the chronic intractable pain community and addition community simultaneously. Accessing proper healthcare should be individualized and made more accessible. When adequate and timely care is not given, we see a more significant burden on taxpayers, individuals, and the State of Arizona. The Arizona Amendment to Section 32-3248.01, Arizona Revised Statutes; Relating to Controlled Substances will help define our rights and improve access to life-sustaining medications for all Arizonans in need and ensure that our state’s government truly represents the people of Arizona so that we may all participate in society more fully.


Learn about the bill overview and process here - 

https://apps.azleg.gov/BillStatus/BillOverview/76634

Sickle Cell Disease Association of America recognized for leadership

HANOVER, Md.—The Sickle Cell Disease Association of America received the Abbey S. Meyers Leadership Award from the National Organization for Rare Disorders. The annual award honors organizations that serve members with strong leadership in advocacy and education.

“We’re grateful for the recognition at the Sickle Cell Disease Association of America,” said Regina Hartfield, president and CEO of the association. “It wouldn’t have been possible without the dedication, hard work and unwavering commitment of the sickle cell community, including our sickle cell warriors, caregivers, staff from the national office and partners. They deserve all the praise.”

The Sickle Cell Disease Association of America will receive the award during a live ceremony at the Rock & Roll Hall of Fame in Cleveland, Ohio, on June 26, 2022, during the National Organization for Rare Disorders’ Living Rare, Living Stronger Patient and Family Forum.

The National Organization for Rare Disorders is an independent advocacy organization representing all patients and families affected by rare diseases in the United States. Together with over 300 disease-specific member organizations, more than 17,000 advocates across all 50 states and national and global partners, the organization works to improve the lives of those impacted by rare diseases.

Press Release

Latest News