AE Alliance is a member of NORD, the National Organization for Rare Disorders. Each year they host The Living Rare, Living Stronger NORD Patient and Family forum, a patient focused conference.
The 2019 Living Rare, Living Stronger NORD Patient & Family Forum will bring the rare community together with physicians, medical students, and allied health professionals for a program of learning, sharing and connection – in an atmosphere of support and understanding – plus fun! This year’s conference will be held on June 21 – 23, 2019 in Houston TX.
The agenda includes sessions in which patients and families can gain insights and practical tools for living their best lives with rare diseases, with tracks provided for newly diagnosed patients, long-term patients, caregivers and physicians/medical students. It is also an opportunity for bonding and fun, with children’s programming, a Family BBQ and a dedicated wellness room with yoga and workshops.
Just a few of the workshops offered:
- Relationships: Managing marriage, raising a rare child and caring for the other children
- Genetic testing: is it for me?
- Stress management: Self-care and emotional Health for the Caregiver
- Current trends and opportunities in Rare Disease Research
For a full overview of what to expect visit: https://rarediseases.org/living-rare-forum/
Rare Impact Awards
On Saturday, June 22, 2019, in conjunction with the Living Rare, Living Stronger Forum, NORD will be hosting its annual Rare Impact Awards bringing attendees together to celebrate those who are making extraordinary contributions to the lives of rare disease patients and caregivers. The Rare Impact Awards will take place on the Saturday of the Forum and will be held at Space Center Houston, the Official Visitors Center of NASA Johnson Space Center.
Who Should Attend?
- Patients and their families (children are welcome!)
- Medical professionals (clinicians, nurses, pharmacists, and more)
- Students (medical, genetic counseling, and more)
- Patient organization leaders and patient advocates
- Researchers and academics