Media Partner
Big4Bio is the premier aggregator of news and developments in the life sciences sector. Our name stands for the cornerstone “Big 4” in biosciences and health: drugs, devices, diagnostics, and digital (also known as the “four D’s”), and our free, daily email newsletters give readers easy-to-scan headlines to “Big 4” content gleaned from thousands of industry sources. We produce individual summaries for the most significant life sciences markets in the world: Boston, San Francisco Bay Area, San Diego, Philadelphia, DC/VA/MD region (Capital Region), New York City, Los Angeles, and Seattle. To learn more, visit big4bio.com
RARE Revolution Magazine is an independent not-for-profit publication dedicated to elevating the voice of the rare disease community through its website, digital magazine, patient engagement services and RARE Youth Revolution. It produces high-quality articles to support disease awareness and education across stakeholders, sectors and geographies. Featuring compelling voices and leading emerging conversations, RARE Revolution Magazine plays its part in turning the tide for rare disease. To find out more about joining the #RARERevolution visit rarerevolutionmagazine.com or contact the team at hello@rarerevolutionmagazine.com
Supporting Partners
By directing and funding paradigm-shifting research initiatives; educating patients, healthcare professionals, and the public; and advocating for survivors and their families, AIM at Melanoma’s goal is to end this disease in our lifetime while improving the lives of those it affects.
Founded in 2004, AIM at Melanoma is a global foundation dedicated to finding more effective treatments and, ultimately, the cure for melanoma.
AIM at Melanoma is dedicated to:
• Innovation in Melanoma Research
• Legislation, Policy & Advocacy
• Information & Support
To learn more, please visit URL: https://www.aimatmelanoma.org/
The American Institutes for Research® (AIR) is a nonpartisan, not-for-profit organization that conducts behavioral and social science research and delivers technical assistance to solve some of the most urgent challenges in the U.S. and around the world. We do this work because when we look to the future, we see opportunities to close gaps that are rooted in injustice. At AIR, we know that equity begins with systems that work for everyone, so we lead with expertise, follow the evidence, and never stop drawing new connections to build a better, more equitable world.
To learn more, please visit https://www.air.org/
AFTD’s mission is to improve the quality of life of people affected by FTD and drive research to a cure. We work every day to advance: Research. We promote and fund research toward diagnosis, treatment and a cure. Awareness. We stimulate greater public awareness and understanding. Support. We provide information and support to those directly impacted. Education. We promote and provide education for healthcare professionals. Advocacy. We advocate for research and appropriate, affordable services.
To learn more, please visit https://www.theaftd.org/
The ASH Research Collaborative (ASH RC) is a non-profit organization established by the American Society of Hematology (ASH) in 2018 to improve the lives of people affected by blood diseases by fostering collaborative partnerships to accelerate progress in hematology.
To learn more, please visit http://ashresearchcollaborative.org/
ASN represents more than 21,000 kidney health professionals working to help people with kidney diseases and their families. Comprised of all of ASN's focus areas, the ASN Alliance for Kidney Health allows the society to continue its growth and work towards the goal of a world without kidney diseases.
To learn more, please visit https://www.asn-online.org/
Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families. We do this through advocacy and support; increasing understanding and acceptance of people with autism; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.
To learn more, please visit http://autismspeaks.org/
The Breast Cancer Research Foundation is a nonprofit organization committed to achieving prevention and a cure for breast cancer. We provide critical funding for cancer research worldwide to fuel advances in tumor biology, genetics, prevention, treatment, metastasis and survivorship.
To learn more, please visit bcrf.org
.png)
A Unique Resource for People with Cancer. Our mission is to empower, inform and engage patients and their care partners to navigate their cancer care and partner with their healthcare team to make informed decisions.
To learn more, visit https://cancer101.org/
The Center for Information and Study on Clinical Research Participation (CISCRP) was founded in 2003, and is a nonprofit organization dedicated to engaging the public and patients as partners in the clinical research process. As part of its mission, CISCRP provides accessible, relevant, high quality educational resources, programs and services that are designed to assist clinical research stakeholders in understanding public and patient attitudes and experiences in research, improve volunteer participation experiences and satisfaction, as well as promote engagement and partnership between clinical research professionals, patients, and the public.
To learn more, visit www.ciscrp.org
.png)
Clinical Trials For All is a nonprofit educational initiative to inform the public about clinical research with the goal of making patient participation diverse, equitable, and widespread.
To learn more, visit https://www.clinicaltrialsforall.org/
DDRF supports access to treatment, prevention, diagnostics and better use of data in DIPG/DMG. One day soon we hope to help our committed researchers and doctors by together funding the cure for this most deadly childhood brain tumor. Learn more about resources available to families impacted by DIPG DMG at
www.DIPG-OneLink.org established September 2023.
.png)
Digital Medicine Society (DiMe) is the first professional organization for experts from all disciplines comprising the diverse field of digital medicine. Together, we drive scientific progress and broad acceptance of digital medicine to enhance public health. DiMe exists to advance the safe, effective, equitable, and ethical use of digital medicine to optimize human health.
To learn more, visit www.dimesociety.org
The mission of the Gorlin Syndrome Alliance is to thoughtfully support, comprehensively educate, and aggressively seek the best treatments and a cure for those affected by Gorlin syndrome.
To learn more, please visit www.gorlinsyndrome.org
Family Reach is a 501(c)(3) nonprofit that provides non-medical financial support to families facing cancer. Treatment requires more than medicine — families need a roof over their heads and food on their tables to survive. If a family can’t meet these basic needs, cancer treatment takes a back seat. We work with patients, providers, and community organizations to challenge the systems that force families to choose between their health and their home. Together, we’re making financial treatment a standard of cancer care.
Family Reach helps cancer patients and caregivers with non-medical expenses. Our free services include:
• Financial assistance covers everyday expenses like food, housing, and utilities
• Resource navigation provides personalized referrals to local and federal support programs
• Guidebook + tip sheets equip you with important financial information
To learn more, please visit https://familyreach.org/
It is the mission of the Fabry Support & Information Group (FSIG) to raise awareness of Fabry disease and its symptoms, to advocate for community needs and to lead the fight for the most effective treatment possible and eventually a cure. FSIG provides a link for the Fabry community to information, each other, the medical community, researchers, the pharmaceutical industry and regulatory authorities. FSIG strives to support affected families and individuals lead fuller lives.
To learn more, please visit fabry.org
.png)
The Gout Support Group of America (GSGA) was founded in 2015 by gout patient advocate Gary Ho and physician Dr. Christopher Parker to provide support to those living with gout. Together, they serve an online community of those living with gout. The support group works to improve the lives of people living with gout through wellness education, empowerment, and support from peers. Members of the group can ask questions, share their experiences, and seek advice from other people who understand what it’s like to live with gout.
To learn more, please visit https://goutsupportgroup.org/
Greater Gift started in 2010 with a simple idea: celebrate the patients in clinical trials and the research professionals who support them in order to reinforce the impact of their participation in research. Our mission has grown through our celebration and community outreach programs to increase awareness of clinical research, especially among underrepresented communities. Greater Gift works to ensure all ethnic, racial, and marginalized populations are represented equally in research, so that medicines, treatments, and medical devices are effective for everyone. To learn more, please visit http://greatergift.org/
Our mission is to improve the lives of people impacted by hypoPARAthyroidism through education, support, research, and advocacy. We are here to raise awareness of HypoPARAthyroidism and to bring change to the lives of those affected. With your help we can make a difference. To learn more, please visit https://hypopara.org/
Our mission is to empower patients of color with the knowledge and trust to pursue clinical trials that can save or extend their lives. We envision a world where communities of color receive the best and most advanced healthcare available, allowing them to live full, healthy lives. To learn more, visit karensclub.org
At Lazarex Cancer Foundation, we strive to improve cancer health outcomes, FDA cancer clinical trial diversity and enrollment, and patient access to care by providing assistance with clinical trial navigation, reimbursing trial related travel costs, and partnering with at-risk communities to mobilize resources. To learn more, please visit https://lazarex.org/
Lighthouse Guild International is the leading not-for-profit profit providing programs and services to people who are blind and visually impaired. We care for over 5000 people who are visually impaired yearly, with patients and clients across the U.S. and internationally. With an emphasis on computer based assistive technology, we provide exceptional services that inspire people who are visually impaired to attain their goals. To learn more, please visit www.lighthouseguild.org
LUNGevity is changing outcomes for people with lung cancer through research, education, and support. We are dedicated to funding scientific research because the link between research spending and improved survival is clear. Our strategic investment in both early detection and therapeutics will help people live better with lung cancer and dramatically improve on the current 19% five-year survival rate. LUNGevity initiatives position us as thought leaders in the lung cancer advocacy community, providing programs and driving change for those with lung cancer today and in the future. While we fund primary research, we also conduct patient-focused research to better understand their unmet needs and convene multi-stakeholder meetings to streamline the research process and accelerate progress to patients. To learn more, please visit https://www.lungevity.org/
The Lupus Research Alliance is the largest nongovernmental, nonprofit funder of lupus research worldwide. The organization aims to transform treatment while advancing toward a cure by funding the most innovative lupus research; fostering diverse scientific talent; stimulating collaborations; and driving discovery toward better diagnostics, improved treatments and, ultimately, a cure for lupus. Because the Lupus Research Alliance’s Board of Directors funds all administrative and fundraising costs, 100% of all donations goes to support lupus research programs. To learn more, visit https://www.lupusresearch.org/
MDIC’s mission is to leverage its unique position as the only public-private partnership of its kind to transform health care into human care. Collaborating with our partners to advance science, we enable transformational medical technology to shape the world we want to live in and make that world possible by shortening the path from innovation to safety to access. To learn more, please visit https://mdic.org/
The Melanoma Research Alliance (MRA) is the largest non-profit funder of melanoma research. Since its founding in 2007, MRA has committed $131 million in funding to advance our understanding of this disease. MRA funds projects in the areas of prevention, diagnosis, and treatment, with the majority of funding allocated for melanoma treatment. The mission of the Melanoma Research Alliance (MRA) is to end suffering and death due to melanoma by collaborating with all stakeholders to accelerate powerful research, advance cures for all patients, and prevent more melanomas. For more information, visit: www.curemelanoma.org
.png)
The Melanoma Research Foundation (MRF) is the largest independent organization devoted to melanoma. Committed to the support of medical research in finding effective treatments and eventually a cure for melanoma, the MRF also educates patients and physicians about prevention, diagnosis and the treatment of melanoma. The MRF is an active advocate for the melanoma community, helping to raise awareness of this disease and the need for a cure. The MRF’s website is the premier source for melanoma information seekers.
To learn more, please visit http://melanoma.org/
The Michael J. Fox Foundation (MJFF) exists for one reason: to accelerate the next generation of Parkinson’s disease (PD) treatments. In practice, that means identifying and funding projects most vital to patients; spearheading solutions around seemingly intractable field-wide challenges; coordinating and streamlining the efforts of multiple, often disparate, teams; and doing whatever it takes to drive faster knowledge turns for the benefit of every life touched by PD.
In principle, it means leveraging our core values of optimism, tenacity, collaboration, boldness, adaptability and curiosity in problem-solving to work on behalf of the 6 million people worldwide living with Parkinson’s.
To learn more, please visit https://www.michaeljfox.org/
The National Minority Quality Forum is a research and educational organization dedicated to ensuring that high-risk racial and ethnic populations and communities receive optimal health care. This nonprofit, nonpartisan organization integrates data and expertise in support of initiatives to eliminate health disparities.
To learn more, visit https://www.nmqf.org/
The National LGBT Cancer Network works to improve the lives of LGBT cancer survivors and those at risk by EDUCATING the LGBT community about our increased cancer risks and the importance of screening and early detection; TRAINING health care providers to offer more culturally-competent, safe and welcoming care; and ADVOCATING for LGBT survivors in mainstream cancer organizations, the media and research. To learn more, please visit http://cancer-network.org/
.png)
The purpose of the North American Prodromal Synucleinopathy (NAPS) Consortium is to support clinical care, advance discovery, promote education, and engage our community in order to improve the quality of life and care of individuals living with RBD. Through these efforts, we aim to develop treatments that will delay the onset of, or prevent the development of, neurodegenerative disorders associated with RBD.
https://www.naps-rbd.org/about-the-consortium
NCCS’ mission is to advocate for quality cancer care for all people touched by cancer. Founded by and for cancer survivors, NCCS created the widely accepted definition of survivorship and defines someone as a cancer survivor from the time of diagnosis and for the balance of life.
NCCS has worked with legislators and policy makers to represent cancer patients and survivors in efforts to improve their quality of care and quality of life after diagnosis. Our unique niche in the cancer advocacy landscape is promoting policy change to ensure quality cancer care. Our vision is to be an advocacy organization that reflects the needs of all cancer survivors to effect policy change at the national level.
To help meet those challenges, NCCS:
• Advocates for changes in how the nation researches, regulates, finances and delivers quality cancer care.
• Empowers cancer survivors through its publications and programs, which provide tools for self-advocacy.
• Convenes other cancer organizations to address nationwide public policy issues affecting cancer survivors.
To learn more, visit https://canceradvocacy.org/
The PAN Foundation is an independent, national 501 (c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic and rare diseases with the out-of-pocket costs for their prescribed medications. Partnering with generous donors, healthcare providers and pharmacies, we provide the underinsured population access to the healthcare treatments they need to best manage their conditions and focus on improving their quality of life. To learn more, please visit https://www.panfoundation.org/
The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. To learn more, visit www.parkinson.org
We envision a future in which patients and their care partners are routinely engaged by drug companies, regulators and payers for their expertise throughout the development and assessment of every new medicine. The Patients’ Academy for Research Advocacy is helping patients and care partners get ready to engage in research as full partners whose unique experience can advance science and medicine. To learn more, please visit https://www.patients-academy.org/
Since 1991, the Pediatric Brain Tumor Foundation’s family support, research funding, and advocacy have led the way in ending the childhood cancer community’s biggest crisis: pediatric brain tumors. Dedicated wholly to addressing this rare but devastating disease and guided by the experiences of patients, survivors, their parents, and siblings, we are the only organization to meet families’ needs along every step of their cancer journey. The largest patient advocacy funder of pediatric brain tumor research, we also fund and advocate for innovative projects that lead to vital discoveries, new clinical trials, and better treatments – all bringing us closer to a cure. We’re able to do that because of people and partners committed to supporting families and ending childhood brain cancer. To learn more, please visit https://curethekids.org/
POP! –Pissed Off Patients is a growing community of patients living with rare and/or chronic illnesses who also identify as living with Medical PTSD brought on by Medical Trauma. We host biweekly discussions on a range of topics related to Medical PTSD, such as trusting friends and family, medical gaslighting, validation of the struggle of illness, etc. To learn more, please visit http://popmedicalptsd.org/
.png)
Our mission is to amplify voices & experiences of all Black people living with rare diseases through advocacy initiatives, education and support. To learn more, please visit https://www.facebook.com/rareandblack
The South Asian community living with inflammatory bowel diseases (Crohn’s disease or ulcerative colitis) faces significant stigma and psychosocial barriers to treatment and surgery. Our mission at South Asian IBD Alliance (SAIA) is to come together as patients and multidisciplinary clinicians (from South Asia and the diaspora) to create resources, research and education for IBD patients and healthcare providers of South Asian origin to minimize disparities, dispel stigma, promote early diagnosis and improve access to treatment. To learn more, visit www.southasianibd.org
Tigerlily Foundation aims to educate and advocate to empower, and support young women, before, during and after breast cancer. Through our programs, we seek to educate and empower women of all backgrounds, including those at heightened risk, those facing health disparities, and those with less access to care. To learn more, visit https://www.tigerlilyfoundation.org/
Touch, The Black Breast Cancer Alliance drives the collaborative efforts of patients, survivors, advocates, advocacy organizations, health care professionals, researchers and pharmaceutical companies to work collectively, with accountability, towards the common goal of eradicating Black Breast Cancer. To learn more, please visit https://touchbbca.org/
2024 Sponsors
.png)
.png)
