Contacts and connectionsYour teachers and teammatesEven though pheo and para are rare diseases, there are many people who know exactly what you’re dealing with—physically and emotionally.
Living with pheo and para
Community supportAdvocacy and research organizations
Visit some of the advocacy and research organizations dedicated to helping people with pheo and para know more and take action.
Our mission is to empower patients with pheo or para, their families, and medical professionals through advocacy, education, and a global community of support, while helping to advance research that accelerates treatments and cures.
The Coalition’s aim is to educate healthcare professionals and patients on the SDHB genetic germline mutation, and to provide information on SDHB’s role and impact in this orphan disease.
NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Our mission is to provide a community of support and education, as well as advocate through awareness for all people impacted by this rare disease.