Overview of Advocacy Initiatives
In the world of Post-Finasteride Syndrome (PFS) and Post-SSRI Sexual Dysfunction (PSSD) advocacy, several organisations and projects are dedicated to raising awareness, supporting research, and helping those affected. Below is a concise overview of key players in both fields.
Organisations Focused on PFS
1. PFS Foundation
Website: PFS Foundation
Focus: Established in 2012, this foundation funds and facilitates research into PFS, aiming to uncover its biological mechanisms and find a cure. It also provides resources and support for patients and their families.
2. PFS Network
Website: PFS Network
Focus: Dedicated to increasing the visibility and understanding of PFS. The network is involved in research, particularly in studying androgen receptors (AR) and other crucial areas, with the aim of supporting the development of treatments.
3. Finasteride Watch
Website: Finasteride Watch
Focus: An independent project highlighting the risks of finasteride, particularly for younger men using it for hair loss. The site provides comprehensive resources focused on the potential side effects of the drug.
4. AVFIN (Aide aux Victimes du Finastéride)
Website: AVFIN
Focus: A French organisation dedicated to advancing knowledge about finasteride’s side effects. AVFIN works closely with health authorities, advocating for recognition and proper care for victims.
Organisations Focused on PSSD
1. RxISK
Website: RxISK
Focus: A research-focused platform allowing patients to report drug side effects. RxISK is particularly active in the PSSD community, providing a space for individuals to share their experiences and contribute to a growing database of drug-related side effects.
2. PSSD Network
Website: PSSD Network
Focus: This organisation raises awareness of PSSD, provides support, and advocates for increased research. They offer a platform for discussion and information sharing within the PSSD community.
3. PSSD Canada
Website: PSSD Canada
Focus: A Canadian organisation focused on raising awareness and advocating for research and support for those affected by PSSD. They provide resources and a community for those dealing with the condition.
4. David Healy
Website: David Healy
Focus: A prominent psychiatrist and researcher, Dr. David Healy is known for his critical work on the side effects of psychiatric medications, including the role they play in PSSD. His work is influential in the field and contributes to the growing awareness and understanding of PSSD.
Bridging the PFS and PSSD Communities
SIDEfxHUB
Website: SIDEfxHUB
Focus: SIDEfxHUB aims to unite the PFS and PSSD communities, recognising the significant similarities between these conditions. They provide a platform for sharing information, advocacy, and support, working to build a stronger collective voice for those affected.
Join the Effort
This overview highlights the key organisations working to promote the causes of PFS and PSSD. If you are part of a project or organisation focused on these conditions that is not listed here, we’d love to hear from you. Please reach out to us, and we’ll gladly add you to this list. Together, we can continue to raise awareness, support research, and build a strong community for those navigating these challenging conditions.
We encourage everyone affected to register yourself in the PFS/PSSD registry and join our WhatsApp peer support groups to stay connected with the community.
Finally, please remember to report your side effects to your national regulator, as this is crucial for gaining recognition and driving change.