What We Do
SPEAK’s fundraising initiatives for rare diseases of Hemophilia and Spinal Muscular Atrophy (SMA) play a crucial role in providing the required financial support for patients’ treatment. Through strategic partnerships, influencer campaign, and fundraising events, we work tirelessly to secure funding for medical treatments and provide comprehensive care services. By mobilizing and engaging the community, we aim to alleviate the financial burden on patients and to improve the quality of life for individuals affected by Hemophilia and SMA.
Under our programs of “Integrated services of safe migration, HIV prevention & care for Migrants workers and families in Pakistan” and “Access to Treatment for Patients suffering from Rare Diseases (Hemophilia & Spinal Muscular Atrophy), we at SPEAK do evidence based advocacy with policy makers and relevant stakeholders to promote safe and orderly migration and address issues and challenges faced by individuals affected by HIV/AIDS, Hemophilia and Spinal Muscular Atrophy.
At SPEAK’s field office in Swat, we provide voluntary & free HIV, Hepatitis B & C testing and counseling to migrants and their families along with home-based testing and counseling while referring HIV-positive migrants to treatment. Additionally, under the program of Access to Treatment for Patients with Rare Diseases, SPEAK provides treatment and medical assistance to patients of Hemophilia and Spinal Muscular Atrophy living in different areas of Pakistan.
We at SPEAK are dedicated to raise awareness for rare diseases such as Hemophilia, Spinal Muscular Atrophy (SMA), and HIV/AIDS. Through various campaigns, workshops, and educational initiatives, we strive to inform the public about the challenges faced by individuals and families affected by these conditions. We spread awareness through mainstream and social media to increase dialogue around migration, gender, HIV, Hemophilia and Spinal Muscular Atrophy . SPEAK organizes multiple TV shows on mainstream media channels to effectively raise the voice for the migrant community particularly regarding their health and to raise funds for hemophilic patients. Our media programs are carefully organized and prepared keeping in consideration the local context, political environment and existing societal views on the subject matter.
To strengthen our advocacy, SPEAK regularly conducts researches to generate evidence and utilize it to emphasize on addressing migrants’ health and HIV challenges, challenges of patients suffering from Hemophilia and Spinal Muscular Atrophy, public health issues, human rights and gender equality. The findings of researches are used for advocacy and to raise awareness.
SPEAK designs and conducts contextualized trainings for the staff and stakeholders working on issues of Human Rights, Gender equality, Hemophilia, Spinal Muscular Atrophy, HIV, safe and orderly migration, trafficking in person and smuggling of migrants.
Access to treatment on Hemophilia and Spinal Muscular Atrophy (SMA)
The medicines used to treat hemophilic and SMA patients costs millions of rupees per annum (tens of thousands of dollars) to keep the patient alive. These are lifesaving drugs which majority of the patients cannot afford and eventually dies as a result.
Under the program “ Integrated services of safe migration, HIV prevention & care for Migrants workers and families in Pakistan” SPEAK is doing evidence based advocacy with policy makers and relevant stakeholders to promote safe and orderly migration and address migrants’ HIV vulnerabilities. SPEAK is also doing advocacy for sustainable HIV funding for migrants through impactful participation of CSOs. SPEAK also advocates for a conducive environment for women human rights defenders.
SPEAK has set up a field office in Swat, from where voluntary & free HIV, Hepatitis B & C testing and counseling are provided to migrants and their families. SPEAK is also mobilizing migrants and providing them with home-based testing and counseling while referring HIV-positive migrants to treatment.