Patient Support and Resources
Patient Advocacy
Facebook is an online forum that helps users connect and share with the people in their life. For the Cincinnati Center for Eosinophilic Disorders (CCED), our Facebook page is an exciting opportunity to reach out to patients, families and professionals whose lives are impacted by eosinophilic disorders.
Facebook is an online forum that helps users connect and share with the people in their life. For the Rothenberg Research Lab, our Facebook page is an exciting opportunity to reach out to patients, families and professionals whose lives are impacted by allergic and eosinophilic disorders and to share what goes on in the lab.
The Campaign Urging Research for Eosinophilic Diseases (CURED) is a nonprofit organization dedicated to raising funds to aid in research and public awareness of eosinophilic disorders. Learn more about CURED or how to get involved with its upcoming fundraising opportunities.
The American Partnership for Eosinophilic Disorders (APFED) is a nonprofit advocacy organization for those living with eosinophilic disorders. It serves as a resource for patients, their families, physicians and the medical community by increasing awareness of eosinophilic disorders and providing funding for research.
The Eosinophilic Family Coalition (EFC) is a network of families that are living with a family member that has an eosinophilic disorder. They have come together in an effort to support each other through this unexpected path on which life has taken them.
Learn more about the Cincinnati Chapter (EFC - C) of the Eosinophilic Family Coalition on their Facebook page.
Learn more about the Dallas Chapter (EFC - D) of the Eosinophilic Family Coalition on their Facebook page.CCED director Marc E. Rothenberg, MD, PhD, joins The Lancet Gastroenterology & Hepatology to talk about eosinophilic esophagitis endotype classification.
The Campaign Urging Research for Eosinophilic Disease (CURED) hosts a research symposium at Cincinnati Children's to share and gain knowledge in the emerging field of Eosinophilic Gastrointestinal Disorders (EGIDs). This conference is not only for physicians, scientists, nurses, social workers, and medical care team members but also for patients and families. Participants gain knowledge about the diagnosis, therapy, psycho/social aspects and the science of eosinophilic disorders. For videos of prior CURED Research Conference and Patient Education Programs (2009, 2013, 2015), please visit the CURED website.
Outside Resources
The focus of A. Jay's Fight is not only on advancing research, in search of a cure, but we take tremendous pride in community outreach and taking a holistic approach to treating EGIDs. We have learned, quality of life is just as important as proper healthcare as our kids grow and begin navigating society independently.
La Asociación Española de Esofagitis Eosinofílica (AEDESEO) is a group based in Spain and that is dedicated to improve diagnostics and help individuals with eosinophilic esophagitis (EoE). There are many resources for individuals whose native language is Spanish.
AEDESEO fue fundada como la Asociación Española de Esofagitis Eosinofílica en 2012 como el primer grupo de España y de Europa dedicada a impulsar el diagnóstico y ayudar a las personas con EoE.
The AusEE Inc - Australia mission statement: "We are committed to raising public awareness and supporting the medical community for further research into eosinophilic disorders in Australia."
Learn more at the AusEE Inc - Australia website and their Facebook page .
The Children's Milk Allergy and Gastrointestinal Coalition (MAGIC) is committed to promoting health care coverage and reimbursement of amino acid-based elemental formulas for children who are unable to consume a natural, life-sustaining diet due to various allergies or diseases, such as eosinophilic disorders. Children’s MAGIC is composed of parents, organizations, institutions, and like-minded individuals.
The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) is dedicated to improving the lives of individuals with eosinophilic gastrointestinal disorders through innovative research, clinical expertise and education via collaborations between scientists, health care providers, patients, and professional organizations. CEGIR is part of the Rare Diseases Clinical Research Network (RDCRN).
The Coalition of Eosinophil Patient Advocacy Groups (C-EOS) was established in 2014 to unite organizations representing the interests of patients with eosinophil-associated diseases to advance key issues of importance to this population. By uniting like-minded organizations that support patients with these diseases, C-EOS aims to strengthen support for research and advocacy opportunities.
End Allergies Together (EAT) is a 501(c)(3) non-profit organization committed to finding a cure for food allergies by directly funding the researchers who strive to find solutions for this growing epidemic.
The EOS Network is a registered charity (1143267) that connects with patients/carers, the general public, professionals and associated organizations globally with the aim of bringing people together to achieve their common goal. The EOS Network is based in the United Kingdom.
Food Allergy & Anaphylaxis Connection Team (FAACT) mission statement: FAACT's mission is to educate, advocate, and raise awareness for all individuals and families affected by food allergies and life-threatening anaphylaxis. Learn more at the FAACT website and the FAACT Facebook page .
Formerly the Food Allergy Initiative and Food Allergy & Anaphylaxis Network, the Food Allergy Research & Education is a nonprofit organization dedicated to bringing about a clearer understanding of the issues surrounding food allergies.
The Food Protein-Induced Enterocolitis Syndrome (FPIES) Foundation is dedicated to overcoming the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community.
The Kids with Food Allergies Foundation is now a division of the Asthma & Allergy Foundation of America (AAFA). These organizations are dedicated to educating and supporting families raising children with food allergies.
Lehedva is an eosinophilic esophagitis group in Israel.
Mothers of Children Having Allergies (MOCHA) is a group of parents sharing information and supporting each other. MOCHA’s mission is to help parents of children who suffer from food allergies. By providing information and opportunities, MOCHA aims to make living with allergies just a little bit easier.
The National Organization for Rare Disorders (NORD) is dedicated to helping the nearly 30 million Americans with rare diseases, and the organizations that serve them, through programs of education, advocacy, research, and patient services.
Utah Food Allergy Network (UFAN) is a local, 501(c)3 non-profit food allergy resource with a Medical Advisory Board. UFAN’s mission is to provide outreach to the newly diagnosed and the community at large, offering support, promoting education, building awareness of the severity of food allergies and anaphylaxis, and advocating for positive change. UFAN has a Division of Eosinophilic Support, which is a support, education and advocacy group for patients and families diagnosed with an eosinophilic gastrointestinal disorder, have restricted diets, or need feeding tube support for pediatric and adult patients.
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