Meet our Patient Worthy Partners

We are a collaborative organization and partner with rare disease advocacy groups to help spread awareness, cover group events and highlight patients and their experiences. Regardless of whether or not your group is an official partner, we encourage all advocacy groups to share any aspect of our content that might help patients and caregivers in your organization.

The Amyloidosis Foundation began with the vision of two patients, Don Brockman and Dennis Krysmalski, to support research and patients in the amyloidosis community. The Foundation prioritizes raising awareness for earlier diagnosis, educating medical personnel, and empowering patient advocacy through various services.

Avery’s Angels was founded by the mom of a little boy who passed from a rare condition called gastroschisis. One blog post at a time, Avery’s Angels developed to what is now a nonprofit foundation focused on research to discover causes and promote prevention, foster awareness, and offer family support for the rare gastroschisis community.

Born A Hero works to empower children suffering from Pfeiffer Syndrome, by both trying to improve the quality of life for those affected and by educating the world so that others recognize that these children are heroes. Born A Hero sheds light on the medical and social issues surrounding Pfeiffer’s syndrome and shares relevant events and other supportive resources with the community.

Breathe With Me is a social media community group trying to raise funds for cystic fibrosis research by focusing on outreach to the non-CF community. The group leads its campaigns by asking the general public to “try breathing like a person with cystic fibrosis.”

CysticLife is the leading social network for the cystic fibrosis community with the goal of creating a positive and uplifting family that anyone affected by CF can access for encouragement, tips, and answers to their questions. Through profiles, members can write blogs, contact each other, and search for members like them, creating an inspirational and worldwide support system for the CF community.

The Cystinosis Research Foundation aims to support bench, clinical, and translational cystinosis research through grants, so that better treatments and a cure can be found for this rare disease. Through this research agenda, the Foundation is dedicated to educating the public and the medical community and raising awareness about cystinosis.

Danny’s Dose was founded by Darlene Shelton, the grandmother to a wonderful little boy with Hemophilia, Danny, who is the heart of Danny’s Dose. Danny’s Dose strives to prevent morbidity and mortality for the population of people with rare disease, chronic illness and special medical needs, who require specialized treatment and/or receiving their patient carried specialty meds in emergencies. They do this through:

  • Informing Americans of the oversight in our emergency medical protocols;
  • Protecting the individuals who can be harmed or loose a life due to improper or delayed treatment;
  • Protecting those Paramedics and Doctors who are forced to make a decision of following a  “rule” or “regulation” over saving joints, muscles, organs, and lives;
  • Being the driving force in building teams in every state to stand and be heard;
  • Seeing these PROTOCOLS amended one state at a time; preferably not by legislation unless absolutely necessary
  • Seeing these PROTOCOLS amended also on the national level;
  • Providing education to families in Emergency Planning and provide Emergency Alert products for their protection
  • Raising awareness to the Medical Association so they can help educate patients and families

The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is a patient-founded and patient-led non-profit organization, comprised of 99% volunteers and represents 32,000 Waldenstrom’s patients worldwide! They want you to know with the IWMF, you are never alone and anyone can become a member. As the IWMF strives to support the lives of those living with this rare cancer, the organization offers critical services to achieve that end.

  • Provides easily-digested information and publications to ensure understanding of WM
  • Educates patients and support persons at their Educational Forum where they can hear from WM researchers and clinicians
  • Updates users with the quarterly Torch newsletter and news releases
  • Provides support from patients and peers who have been in situations common to WM patients and caregivers
  • Provides important information for medical professionals who may not know very much about WM
  • Supports research for more effective treatments and the search for a cure

The Oley Foundation is a national non-profit organization, founded in 1983. They aim to “enrich the lives of patients dependent on home intravenous nutrition (parenteral) and tube feeding (enteral) through education, advocacy, and networking.” They are a “resource for consumer’s families, clinicians and industry representatives, and other interested parties. The Foundation gives members the tools and confidence they need to manage their complex therapy and enables them to achieve normalcy in their lives.”

Personalize My Medicine works to help bridge the information gap between the explosion in medical innovations and the researchers, doctors, and patients who want to apply this information to their work and life, thus placing patients at the center of medical advancements. The goal of Personalize My Medicine is to solve this problem by creating a patient-centered medicine approach, in which patients have better access to innovations and actively participate in making them available.

The Myelodysplastic Syndromes (MDS) Foundation was created by a group of international physicians and researchers who wanted to make sure that information about MDS was always available. Now, the organization has developed to include patient advocacy groups, research funding, and educational initiatives. In addition, the MDS Foundation works to set up an international information network to contact patients for available clinical trials, thus sharing new treatment options in the community.

The PURA Syndrome Foundation is a nonprofit, global foundation to serve, educate, and fund research for the PURA syndrome community. The Foundation brings together families, clinicians, and researchers to create a sense of community, helping make sure that no one feels alone by this rare disease.

PBCers Organization is the largest primary biliary cholangitis (PBC) online support group worldwide, consisting of patients, families, and caregivers. The organization hopes that through education and discussions, “no one will feel alone with PBC.”

The World Alliance of Pituitary Organizations (WAPO) is a nonprofit, self-governed organization that was created to unite the pituitary patient community internationally by sharing information, fostering teamwork, and building support.  In doing so, WAPO pushes for global pituitary awareness activities, and overall, the best possible standard-of-care for patients worldwide.

The National Organization for Rare Disorders (NORD) is a nonprofit organization dedicated to serving the rare disease community through education, research, and patient advocacy. Through targeting patient organizations, medical personnel, and researchers trying to develop new diagnostics and treatments, NORD supports all parts of this community to ultimately improve the lives of patients and families affected by rare diseases. After all, alone we are rare, but together we are strong®. *Patient Worthy served as a 2016 Rare Disease Day Partner with NORD.

Want to become a Patient Worthy partner? We’d love to hear from you!

Contact Phone:757-707-7842
Email: Kathy@patientworthy.com
Kathryn Devanny, Advocacy Relations Director

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