It can be hard to feel heard as a patient with HHT, but when you meet a team of doctors who understand what you need, things begin to fall into place. The same is true for Cure HHT – though we are a strong advocating voice, it helps to have a team that backs us up to affect change. Each partnership opens the door to further educate the medical professionals who, in turn, end up on your team.
Partner: Society of Interventional Radiology is a national organization of physicians, scientists and allied health professionals dedicated to improving public health through disease management and minimally invasive, image-guided therapeutic interventions.
Benefits: This partnership has resulted in the designation of the National HHT Patient & Family Conference for a maximum of 18.5 AMA PRA Category 1 CreditsTM in continuing medical education, drawing physicians from outside the HHT community to learn about the disease.
Partner: For more than 30 years National Organization for Rare Disorders has been a leader in voicing the needs of the rare disease community, driving policies, advancing medical research and providing patient and family services.
Benefits: NORD hosted HHT patient representatives at the American Medical Student Association meeting and two-day NORD Summit conference. Cure HHT has also been incorporated into outreach programs and Global Rare Disease Day.
Partner: Genetic Alliance includes more than 1,200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies and public policy organizations. They apply solutions in health and disease, practice and prevention on the local and global level.
Benefits: Genetic Alliance provided IRB approval for Cure HHT to recruit for the NIH Brain AVM Study and provides Cure HHT with access to a professional discussion forum, disease info research database and seminars related to the rare disease community.
Partner: Coalition for Imaging and BioEngineering Research has more than 180 members, including 99 patient advocacy groups representing the full spectrum of diseases that use imaging for detection, diagnosis and treatment. They educate the public about imaging research and advocate for federal support.
Benefits: Cure HHT attended the CIBR Medical Technology Showcase on Capitol Hill to educate the radiology community about HHT. Cure HHT has also been featured in the CIBR blog, newsletter and social media feeds to educate professionals on recognizing HHT.