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Ax-S Pharma

Ax-S Pharma is the leading education resource on Expanded Access to new medicines, worldwide. The Expanded Access Summit® is the world’s largest annual conference on pre-market access to medicines. The Summit focuses on the core feasibility factors and the innovations that enable greater use of Expanded Access and other "treatment-use" trials. Join us at EA4-Virtual as we again set new best practices for integrating research into modern healthcare for everyone.

Ax-S Thursday

Ax-S Thursdays is a series of 4 biweekly webinars broadcast in February and March 2021. Join us in a fully interactive, virtual conference environment.

EURORDIS Rare Diseases Europe

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 929 rare disease patient organisations from 72 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.​

Eye For Pharma

Join thousands of your peers at the world’s gathering for pharma pioneers and health innovators - Reuters Events Pharma 2021 (formerly eyeforpharma Barcelona) – the biggest, most senior and cross-functional commercial pharma event. Reuters Events Pharma 2021 is huge. But it’s also intimate, tailored just for you. Engage in executive discussions on commercial, marketing, medical affairs, market access, RWE and patient engagement as we re-imagine pharma.

Global Genes

Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. We fulfill our mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own behalf.

Health Advocacy Summit

Health Advocacy Summits mission is to connect and empower young adults with chronic and rare conditions through events, meetings, and programs.


NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Orphan Drug

The World Orphan Drug Congress is an award-winning event with an exhibition that has grown to become the largest and most established orphan drugs & rare diseases meeting of its kind across the globe. Now in its 12th annual edition, the World Orphan Drug Congress Europe, together with the co-located Cell & Gene Therapy Congress, will continue to bring experts from the whole value chain under one roof, where you get to meet decision makers in the areas that are most applicable for your business offering.

Precision Medicine Forum

Precision Medicine Forum – Patient Week is designed with the patient at the very forefront of the discussions. Held virtually and free to attend for patients and advocates, this is the first event in our ongoing initiative to bring more patients into the discussion around precision medicine.

Rare Patient Voice

Rare Patient Voice, LLC provides patients and caregivers with rare diseases an opportunity to voice their opinions through surveys and interviews to improve medical products and services. Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 40 years experience in marketing research, and more than 20 years in healthcare marketing research. While we started by focusing on rare diseases, we now welcome patients and caregivers with all medical conditions. Rare Patient Voice takes an active approach to meet patients at conferences and events. Our phone is always open to members. The more we can engage with patients, the more we can advocate for them and help their voices be heard.

RareFunding Team

RareFundingTeam is dedicated to helping people with rare diseases realize their hopes and dreams through improving their patient organizations. The site is focused on matching rare disease organizations with professionals who volunteer their time assisting them on a project or short-term basis. ​

Registered Charity No: 1166365

Remarkable Insight

About Raremark We’re here to inspire an information revolution in rare disease. Our contribution will be to build a knowledge bank for the lived experience of rare disease, and it will catalog every aspect of life with a rare condition: specifically, any of the 7000+ rare conditions. Incredibly ambitious? You bet. We’re crowdsourcing and organizing the wisdom of experts: patients, parents, and caregivers who deeply understand what it’s like to live with a rare disease every day. We believe free access to information is key to helping everyone better understand, manage, and talk about the rare condition that’s part of their life. And that’s what our vision is all about: shaping a future where all rare conditions are understood and treated.
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