This video features a meeting organized by Tatiana Guendulain and Florencia Braga Menéndez (from ALAPA) focused on building a global support network for patients with TMAU and other rare diseases. The discussion emphasizes the importance of community, advocacy, and organization for those who often feel isolated. Tatiana's Channel is at https://www.youtube.com/@tatianaguendulain9565
Key Themes and Strategies:
- Empowerment through Organization: Florencia explains that the most effective strategy for rare disease advocacy, especially in countries with limited resources, is creating umbrella organizations that unite various rare disease groups to gain visibility and influence (2:49 - 3:03, 18:24 - 18:56).
- Global Networking: The meeting connects participants from countries including Argentina, Kenya, Puerto Rico, and the United States. Participants are encouraged to form networks, use social media for awareness, and utilize tools like WhatsApp and Clubhouse to maintain communication (4:56 - 5:24, 14:27 - 14:53, 52:03 - 52:47).
- Accessing Research: The discussion covers the significance of tracking clinical trials (using resources like clinicaltrials.gov) to monitor and encourage local medical research development, which increases the likelihood of future treatment access (25:21 - 31:45).
- Mental Health Support: A significant portion of the conversation focuses on the emotional toll of TMAU, including depression and social stigma. Participants like Oscar and Avienne share their personal journeys and emphasize the critical need for psychological support and the bravery required to speak out and raise awareness (32:12 - 33:34, 38:00 - 42:20).
Proposed Future Actions:
- Virtual Conferences: Oscar suggests organizing both virtual and, eventually, in-person conferences to bring together patients, researchers, and stakeholders to increase global awareness (23:49 - 24:38).
- Disability Recognition: Florencia provides a link to Orphanet resources to help patients advocate for the recognition of their condition as a disability to access institutional support (10:29 - 12:33).
- Ongoing Communication: The group plans to continue these meetings, potentially monthly, to refine their organizational strategy and support systems (15:43 - 16:04, 103:38 - 104:14).
Trimethylaminuria - Florencia Braga Menéndez (ALAPA)
Tatiana's TMAU webinar 26 Feb 22
Thank you Tatiana Guendulain for the TMAU webinar on 26 Feb 22.
Prof in Genetics and Biotechnology, and Phd student in chemical sciences.
And also thanks to Florencia Braga Menéndez of ALAPA for the part 2 webinar.
Here is the recording on youtube part 1 & 2 on Tatiana's youtube channel.
Feel free to subscribe to her channel.
